NOTES

INTRODUCTION: THE TALISMAN

Ruth Hubbard: See Ruth Hubbard, The Politics of Women’s Biology (Rutgers, NJ: Rutgers University Press, 1990).

Londa Schiebinger and Cynthia Eagle Russett: Londa Schiebinger, The Mind Has No Sex? Women in the Origins of Modern Science (Cambridge, MA: Harvard University Press, 1989); Cynthia Eagle Russett, Sexual Science: The Victorian Construction of Womanhood (Cambridge, MA: Harvard University Press, 1989).

Stephen Jay Gould: Stephen Jay Gould, The Mismeasure of Man (New York: W.W. Norton, 1981). Gould’s treatment of the work of Samuel George Morton’s craniometry in that book has since come under significant criticism; see Jason E. Lewis et al., “The Mismeasure of Science: Stephen Jay Gould Versus Samuel George Morton on Skulls and Bias,” PLoS Biology 9 (2011): e1001071.

This article mapped out: Alice Domurat Dreger, “Doubtful Sex: The Fate of the Hermaphrodite in Victorian Medicine,” Victorian Studies 38, no. 3 (Spring 1995): 335–70. I later published my first book based on this work: Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Cambridge, MA: Harvard University Press, 1998).

Bo got my work: On our early meeting and collaboration, see Alice Dreger, “Cultural History and Social Activism: Scholarship, Identities, and the Intersex Rights Movement,” in Locating Medical History: The Stories and Their Meanings, ed. Frank Huisman and John Harley Warner (Baltimore: Johns Hopkins University Press, 2004): 390–409.

someday experience orgasm: I later documented and criticized this system in Alice Domurat Dreger, “‘Ambiguous Sex’—or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality,” Hastings Center Report 28, no. 3 (1998): 24–35.

clitoris had been amputated: See Cheryl Chase, “Affronting Reason,” in Looking Queer: Body Image and Identity in Lesbian, Bisexual, Gay, and Transgender Communities, ed. Dawn Atkins (Binghamton, NY: Harrington Park Press, 1998): 205–20; Elizabeth Weil, “What If It’s (Sort of) a Boy and (Sort of) a Girl?” New York Times, Sept. 24, 2006, http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html.

Bailey had suggested: J. Michael Bailey, The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism (Washington, DC: Joseph Henry Press, 2003).

account of the controversy: My article appeared as Alice Dreger, “The Controversy Surrounding The Man Who Would Be Queen: A Case History of the Politics of Science, Identity, and Sex in the Internet Age,” Archives of Sexual Behavior 37, no. 3 (June 2008): 366–421, http://link.springer.com/article/10.1007%2Fs10508-007-9301-1.

New York Times: This was covered in Benedict Carey, “Criticism of a Gender Theory, and a Scientist Under Siege,” New York Times, Aug. 21, 2007, www.nytimes.com/2007/08/21/health/psychology/21gender.html.

Galileo actively argued: This account of Galileo is based largely on the excellent biography by David Wootton, Galileo: Watcher of the Skies (New Haven, CT: Yale University Press, 2010).

“cause of the eggs hardening”: Ibid., 164.

“making human beings seem insignificant”: Ibid., 169.

Founding Fathers were science geeks: See Jonathan Lyons, The Society for Useful Knowledge: How Benjamin Franklin and Friends Brought the Enlightenment to America (New York: Bloomsbury Press, 2013).

Galileo’s middle finger: See Rachel Donadio, “A Museum Display of Galileo Has a Saintly Feel,” The New York Times, July 22, 2010, http://www.nytimes.com/2010/07/23/world/europe/23galileo.html.

“Tiphaeus ever reached”: Translation from anonymous, “The Right Kinds of Relics,” http://friendsofdarwin.com/2007/04/20070415/.

CHAPTER ONE: FUNNY LOOKING

genital appearance upsets or worries some adult: The somewhat shocking and non-evidence-based clinical pediatric approaches as they existed in the 1990s were documented in an important critical analysis by two gynecologists: Sarah Creighton and Catherine Minto, “Managing Intersex,” BMJ [British Medical Journal] 323, no. 7324 (2001): 1264–65.

Winston Churchill: Speaking of Chamberlain, Churchill said, “Poor Neville, he will come badly out of history. . . . I know, because I will write the history.” Quoted on p. 11 of Robert J. Caputi, Neville Chamberlain and Appeasement (London, England: Associated University Presses, 2000).

about one in two thousand babies: The medical literature contains no good study of the frequency of “ambiguous genitalia” (again, presumably because one would have to simply decide what would count). In order to get at an estimate, Bo Laurent (Cheryl Chase) and I asked specialists to tell us how often their teams were called to a birth because a baby’s genitals were too unclear to assign a sex, and the figure consistently came to about one in fifteen hundred to one in two thousand.

About one in three hundred babies: This would include, for example, when a girl is born with a larger than expected clitoris or when a boy is born with hypospadias, i.e., when the urinary opening is not at the tip of the penis. The frequency of hypospadias is given in one current textbook as ranging from “between 0.4 to 8.2 cases per 1000 newborn boys”; see Bernardita Troncoso and Pedro-Jose Lopez, “Hypospadias,” in Pediatric Urology Book, ed. Duncan Wilcox, Prasad Godbole, and Christopher Cooper, http://www.pediatricurologybook.com/hypospadias.html.

one in a hundred: Melanie Blackless et al., “How Sexually Dimorphic Are We? Review and Synthesis,” American Journal of Human Biology 12, no. 2 (2000): 151–66.

twenty-five and in graduate school: In 2003, at the request of two historians of medicine editing a book on our profession, I wrote about why I became an activist-historian; see Alice Dreger, “Cultural History and Social Activism: Scholarship, Identities, and the Intersex Rights Movement,” in Locating Medical History: The Stories and Their Meanings, ed. Frank Huisman and John Harley Warner (Baltimore: Johns Hopkins University Press, 2004): 390–409.

one of my dissertation directors: Because it bridged the history of medicine and science, my dissertation was codirected by Fred Churchill (historian of science) and Ann Carmichael (historian of medicine); see Alice Domurat Dreger, Doubtful Sex, Doubtful Status: Cases and Concepts of Hermaphroditism in France and Britain, 1868–1915 (PhD dissertation, Indiana University, 1995).

my three hundred primary sources: I discuss this methodology and subject more fully in the book based on my dissertation: Alice Domurat Dreger, Hermaphrodites and the Medical Invention of Sex (Cambridge, MA: Harvard University Press, 1998).

nineteenth-century Frenchwoman: See the story of Louise-Julia-Anna in Ibid., 110–13, 138.

feminine breasts with a penis: We now know that mixed external sex anatomy can arise from a large number of conditions, including congenital adrenal hyperplasia in genetic females, partial androgen insensitivity syndrome in genetic males, various tumors, and polycystic ovary syndrome, just to name a few. Not all of the causes of mixed external sex anatomy are congenital (inborn).

the other sex’s organs inside: We now understand that complete androgen insensitivity syndrome (cAIS) can cause a person to develop externally and behaviorally like a typical female, although internally she will have testes and will lack female reproductive organs (except for the vagina and vulva). It is not uncommon for this condition to go undiagnosed until late adolescence. We also now know that extreme forms of congenital adrenal hyperplasia (CAH) can cause a genetic female to develop as a fairly typical male in terms of external genitalia, so that the child would ordinarily be assumed to be male at birth, even though internally the child will have ovaries and a uterus.

manly at puberty: These would represent cases of 5-alpha-reductase deficiency, which causes a child to be born looking much like a typical female but to undergo a male-typical puberty. The protagonist of the novel Middlesex has this condition, as probably did Herculine Barbin. See Jeffrey Eugenides, Middlesex: A Novel (New York: Farrar, Straus & Giroux, 2002) and Michel Foucault, Herculine Barbin: Being the Recently Discovered Memoirs of a Nineteenth-Century French Hermaphrodite, trans. Richard McDougall (New York: Pantheon: 1980).

the doctors’ eyebrows rise: These cases are traced in Dreger, Hermaphrodites.

Age of Gonads: This history is spelled out more fully in chapter 5 of Dreger, Hermaphrodites, and in Alice Dreger, “Hermaphrodites in Love: The Truth of the Gonads,” in Science and Homosexualities, ed. Vernon A. Rosario (New York: Routledge, 1997): 46–66.

Together Wilkins and Money: This is best described in Sandra Eder, The Birth of Gender: Clinical Encounters with Hermaphroditic Children at Johns Hopkins, 1940–1956 (PhD dissertation, Johns Hopkins University, 2011). See also Sandra Eder, “From ‘Following the Push of Nature’ to ‘Restoring One’s Proper Sex’: Cortisone and Sex at Johns Hopkins’s Pediatric Endocrinology Clinic,” Endeavour 36, no. 2 (2012): 69–76.

sometimes lies: For a collection of first-person accounts of this treatment system from people born intersex, see Alice Domurat Dreger, ed., Intersex in the Age of Ethics (Hagerstown, MD: University Publishing Group, 1999).

core group: For raw footage of intersex adults talking in the mid-1990s about what happened to them, see the videotape made by Bo Laurent/Cheryl Chase, Hermaphrodites Speak! (San Francisco: Intersex Society of North America, 1997), 30 minutes, http://www.youtube.com/watch?v=BwSOngdR7kM.

Intersex Society of North America: Bo Laurent (ISNA’s founder) has written extensively on the motivations and origins of the intersex rights movement, often under her activist name, Cheryl Chase. See, for example, Cheryl Chase, “Affronting Reason,” in Looking Queer: Image and Identity in Lesbian, Bisexual, Gay and Transgender Communities, ed. Dawn Atkins (Binghamton, NY: Harrington Park Press, 1998): 205–20; and Cheryl Chase, “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism,” GLQ: A Journal of Lesbian and Gay Studies 4, no. 2 (1998): 189–211.

a few people did: In the late nineteenth century, thanks to advances in anesthesia and infection control, surgery became safer and less painful, and at this point, a small number of hermaphroditic patients inquired about surgical options. I track this in Dreger, Hermaphrodites.

while most seemed fairly unconcerned: This variation is traced in Dreger, Hermaphrodites, but was first hinted at in the article that caused Bo to contact me: Alice Domurat Dreger, “Doubtful Sex: The Fate of the Hermaphrodite in Victorian Medicine,” Victorian Studies 38, no. 3 (1995): 335–70.

Bo was to be counted: Bo’s personal history was recounted in various documentaries as well as in Elizabeth Weil, “What If It’s (Sort of) a Boy and (Sort of) a Girl?” New York Times, Sept. 24, 2006, www.nytimes.com/2006/09/24/magazine/24intersexkids.html.

Bo and I later successfully worked to get rid of it: The article where we argued for the change in nomenclature is: Alice D. Dreger, Cheryl Chase, Aron Sousa, Philip A. Gruppuso, and Joel Frader, “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale,” Journal of Pediatric Endocrinology and Metabolism 18, no. 8 (2005): 729–33. Shortly thereafter, the medical establishment officially dropped all diagnoses based on the term “hermaphrodite” and adopted the umbrella term “disorders of sex development” for all intersex conditions; see Peter A. Lee et al., “Consensus Statement on Management of Intersex Disorders” (also known as the Chicago Consensus), Pediatrics 118 (2006): e488–e500. This shift was controversial among activists; see Ellen K. Feder, “Imperatives of Normality: From ‘Intersex’ to ‘Disorders of Sex Development,’” GLQ: A Journal of Lesbian and Gay Studies 15, no. 2 (2009): 225–47; Georgiann Davis, The Dubious Diagnosis: How Intersex Became a Disorder of Sex Development (New York: New York University Press, 2015).

Bo had also been born with ambiguous genitalia: See Weil, “What If . . .”

marshaled her lesbian feminist political consciousness: See Chase, “Affronting Reason,” and Chase, “Hermaphrodites with Attitude.”

took on a new name: See “Cheryl Chase (Bo Laurent),” www.isna.org/about/chase.

latest medical books: For documentation and analyses of the homophobia behind the modern medical management of intersex, see Alice Domurat Dreger, “‘Ambiguous Sex’—or Ambivalent Medicine? Ethical Problems in the Treatment of Intersexuality,” Hastings Center Report 28, no. 3 (1998): 24–35; Suzanne J. Kessler, Lessons from the Intersexed (New Brunswick, NJ: Rutgers University Press, 1998); Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality (New York: Basic Books, 2000).

name in the snow: Adrienne Carmack, Lauren Notini, and Brian D. Earp, “Should Elective Surgery for Hypospadias Be Performed before an Age of Consent?,” forthcoming, includes this typical medical construction of the problem: “It is the inalienable right of every boy to be a pointer instead of a sitter by the time he starts school and to write his name legibly in the snow”; from O. S. Culp and J. W. McRoberts, “Hypospadias,” in C. E. Alken, V. Dix, and W. E. Goodwin, eds., Encyclopedia of Urology (New York: Springer-Verlag, 1969): 11307–44.

Martha Coventry: See Martha Coventry, “Finding the Words,” in Dreger, Intersex in the Age of Ethics, 71–76.

David Cameron Strachan: See David Cameron, “Caught Between: An Essay on Intersexuality,” in Dreger, Intersex in the Age of Ethics, 91–96; David Cameron, “Being Different and Fitting In,” http://oiiinternational.com/2538/fitting; Anonymous, “2008 LGBT Heroes: David Cameron Strachan, Intersex Community Volunteer Activist,” http://www.kqed.org/community/heritage/lgbt/heroes/2008.jsp.

gazing upon her in the book: For more on the medical display of intersex people, see Sarah Creighton et al., “Medical Photography: Ethics, Consent and the Intersex Patient,” BJU International 89, no. 1 (2002): 67–71; and see Alice Domurat Dreger, “Jarring Bodies: Thoughts on the Display of Unusual Anatomies,” Perspectives in Biology and Medicine 43, no. 2 (2000): 161–72.

daughter’s noticeably long clitoris: Bo and I interviewed this mother and daughter on the record in “A Mother’s Care: An Interview with ‘Sue’ and ‘Margaret,’” in Dreger, Intersex in the Age of Ethics, 83–89.

her clitoris was bigger than most: This woman provided a short essay for an anthology I collected; see Kim, “As Is,” in Dreger, Intersex in the Age of Ethics, 99–100.

she had testes inside: We alluded to this story in Dreger et al., “Changing the Nomenclature.”

a uterus inside of him: This man was a genetic female with an extreme form of congenital adrenal hyperplasia.

now she was going to die: Bo and I often showed people a surgical training video that explained that sometimes “for social reasons” surgeons “needed” to shorten clitorises on very young babies, before it was really medically advisable to attempt anesthesia; see Richard Hurwitz et al., “Surgical Reconstruction of Ambiguous Genitalia in Female Children,” (Woodbury, CT: Cine-Med, 1990).

Bruce Wilson: See Bruce E. Wilson and William G. Reiner, “Management of Intersex: A Shifting Paradigm,” in Dreger, Intersex in the Age of Ethics, 119–35.

“phall-o-meters”: The phall-o-meters were inspired by an article by Suzanne Kessler, “Meanings of Genital Variability,” Chrysalis: The Journal of Transgressive Gender Identities 2 (1997): 33–38.

fit social norms: For more on medical interpretations of “correct” phallus size, see Dreger, Hermaphrodites, 183.

extensive ethical critique: See Dreger, “‘Ambiguous Sex.’”

next book I published: See Dreger, Intersex in the Age of Ethics; this was based on a special journal issue on intersex, Journal of Clinical Ethics 9, no. 4 (Winter 1998).

I paid a university photographer: I explained the logic behind this act in Dreger, “Jarring Bodies.”

As Nature Made Him: John Colapinto, As Nature Made Him: The Boy Who Was Raised as a Girl (New York: HarperCollins, 2000).

Reimer also failed to prove Money’s theory: This story first broke in 1997, startling the medical establishment, but did not garner widespread public attention until Colapinto’s treatment. See Natalie Angier, “Sexual Identity Not Pliable After All, Report Says,” New York Times, Mar. 14, 1997, http://www.nytimes.com/1997/03/14/us/sexual-identity-not-pliable-after-all-report-says.html; this was a front-page story on an academic journal report from critics of Money; Milton Diamond and H. Keith Sigmundson, “Sex Reassignment at Birth: Long-Term Review and Clinical Implications,” Archives of Pediatric and Adolescent Medicine 151, no. 3 (1997): 298–304.

most intersex people kept the gender assignments: Gender outcomes are reviewed in Lee et al., “Consensus Statement.”

Bo said it as plainly as she could: See Cheryl Chase, “What Is the Agenda of the Intersex Patient Advocacy Movement?” Endocrinologist 13, no. 3 (2003): 240–42. See also Lee et al., “Consensus Statement,” for evidence that the clinical establishment was by 2006 recognizing Bo’s and ISNA’s formulation of the problem: “Although clinical practice may focus on gender and genital appearance as key outcomes, stigma and experiences associated with having a DSD [disorder of sexual development] (both within and outside the medical environment) are more salient issues for many affected people” (p. e496).

Bill Reiner: For Reiner’s challenges to John Money’s established paradigm, see Wilson and Reiner, “Management of Intersex,” and see William G. Reiner and John P. Gearhart, “Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth,” New England Journal of Medicine 350, no. 4 (2004): 333–41.

maximin strategy: Howard Brody and James R. Thompson, “The Maximin Strategy in Modern Obstetrics,” Journal of Family Practice 12, no. 6 (1981): 977–86.

resulted in more net harm: For a synopsis of this ongoing problem in obstetrics, see Aron C. Sousa and Alice Dreger, “The Difference between Science and Technology in Birth,” JAMA Virtual Mentor 15, no. 9 (2013): 786–90.

the founder of pediatric endocrinology: See Eder, The Birth of Gender.

Money had known: See Colapinto, As Nature Made Him.

Articles and op-eds: See, for example, Creighton and Minto, “Managing Intersex”; Wilson and Reiner, “Management of Intersex” (originally published in Journal of Clinical Ethics 9, no. 4 [1998]: 360–69); Kenneth Kipnis and Milton Diamond, “Pediatric Ethics and the Surgical Assignment of Sex,” Journal of Clinical Ethics 9, no. 4 (1998): 398–410 (republished in Dreger, Intersex in the Age of Ethics, 173–193).

conjoined twins: This is explained in Alice Dreger, One of Us: Conjoined Twins and the Future of Normal (Cambridge, MA: Harvard University Press, 2004). See also Alice Dreger, “The Sex Lives of Conjoined Twins,” The Atlantic (Oct. 25, 2012), www.theatlantic.com/health/archive/2012/10/the-sex-lives-of-conjoined-twins/264095.

UCLA surgeon: See Dreger, One of Us, 62.

more impairment and shorter life spans: See Dreger, One of Us. See also Alice Domurat Dreger, “The Limits of Individuality: Ritual and Sacrifice in the Lives and Medical Treatment of Conjoined Twins,” Studies in History and Philosophy of Biological and Biomedical Sciences 29c, no. 1 (Mar. 1998): 1–29. See also Alice D. Dreger and Geoffrey Miller, “Conjoined Twins” in Pediatric Bioethics, ed. Geoffrey Miller (Cambridge, UK: Cambridge University Press, 2010): 203–18.

Ladan and Laleh Bijani: see Dreger, One of Us, 41–43 and 66–67.

“achieve their dream of separation”: Keith Goh quoted in Anonymous, “Nation in Shock over Death of Iranian Twins,” Belfast News Letter (Northern Ireland), July 9, 2003, 14.

political consciousness about LGBT: See Chase, “Hermaphrodites with Attitude.”

discrimination against a sexual minority: On this point, see Alice D. Dreger and April M. Herndon, “Progress and Politics in the Intersex Rights Movement: Feminist Theory in Action,” GLQ: A Journal of Lesbian and Gay Studies 15, no. 2 (2009): 199–224.

penetrated by men: For a review of the evidence of homophobia in the medical literature on intersex, see Dreger, “‘Ambiguous Sex’”; Kessler, Lessons from the Intersexed; Fausto-Sterling, Sexing the Body.

“I’m not a doctor”: I wrote about this technique of relationship-building in Alice Dreger, “Sleeping with the Enmity,” Atrium, no. 3 (2006): 12.

Oprah: See “Growing Up Intersex,” The Oprah Winfrey Show, July 19, 2008, www.oprah.com/oprahshow/Growing-Up-Intersex.

Richard Rink: The press release I wrote for ISNA on this was published as Alice Dreger, “Urologists: Agonize over Whether to Cut, Then Cut the Way I’m Telling You,” Intersex Society of North America, Oct. 14, 2004, www.isna.org/articles/aap_urology_2004.

San Francisco Human Rights Commission: For the report that emerged, see Marcus de María Arana, ed., A Human Rights Investigation into the Medical “Normalization” of Intersex People, a Report of a Public Hearing by the Human Rights Commission (City and County of San Francisco, 2005).

wrote something like this: See Weil, “What If . . .”

simply to be treated as human: See Alice Dreger, “Intersex and Human Rights: The Long View,” Ethics and Intersex, ed. Sharon E. Sytsma (Doetinchem, Netherlands: Springer, 2006), 73–86.

CHAPTER 2: RABBIT HOLES

two handbooks: These were compiled in their first form by Sallie Foley and Christine Feick, and ultimately published in 2006 as Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents (now available through Accord Alliance, www.accordalliance.org/dsd-guidelines/).

list of talking points: I wrote about this strategy in Alice Dreger, “Footnote to a Footnote: On Roving Medicine,” in Bioethics Forum, Oct. 9, 2008, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=2484.

international medical consensus: See Peter A. Lee et al., “Consensus Statement on Management of Intersex Disorders” (also known as the Chicago Consensus), Pediatrics 118 (2006): e488–e500

real problem in intersex care: See for example, Richard S. Hurwitz, “Long-Term Outcomes in Male Patients with Sex Development Disorders—How Are We Doing and How Can We Improve?,” Journal of Urology 184, no. 3 (2010): 821–32.

study of “fag hags”: Nancy H. Bartlett, H. M. Patterson, Douglas P. VanderLaan, and Paul L. Vasey, “The Relation Between Women’s Body Esteem and Friendships with Gay Men,” Body Image 6, no. 3 (2009): 235–41.

Bailey transsexualism controversy: Alice Dreger, “The Controversy Surrounding The Man Who Would Be Queen: A Case History of the Politics of Science, Identity, and Sex in the Internet Age,” Archives of Sexual Behavior 27, no. 3 (2008): 366–421, http://link.springer.com/article/10.1007%2Fs10508-007-9301-1.

popular, comforting narrative: For an example of this kind of narrative of transgender, see Randi Ettner, Confessions of a Gender Defender: A Psychologist’s Reflections on Life Among the Transgendered (Chicago: Spectrum Press, 1996).

quest for the true self: Carl Elliott discussed the connection between the standard story of transsexualism and American narratives of authenticity in Better Than Well: American Medicine Meets the American Dream (New York: Norton, 2003).

This rankled Bailey: Bailey told me that it was Ettner’s book, Confessions of a Gender Defender, that made him determined to write the “true” story in a book of his own; J. Michael Bailey interview with Alice Dreger, Aug. 8, 2006, revised transcript received Aug. 8, 2006, and e-mail from Bailey to Dreger, Aug. 22, 2006. This is also discussed in Dreger, “Controversy,” 371.

The Man Who Would Be Queen: J. Michael Bailey, The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism (Washington, DC: Joseph Henry Press, 2003).

advice of colleagues: Ray Blanchard, interview with Alice Dreger, Aug. 2, 2006, revised transcript received Aug. 3, 2006; also discussed in Dreger, “Controversy,” 377.

“becoming a girl”: Bailey, Man Who Would Be Queen, 50.

Blanchard concluded: See Ray Blanchard, “The Concept of Autogynephilia and the Typology of Male Gender Dysphoria,” Journal of Nervous and Mental Disease 177 (1989): 616–23.

“well suited to prostitution”: Bailey, Man Who Would Be Queen, 185.

Blanchard coined a new term: See Blanchard, “Concept of Autogynephilia.”

fa’afafine: Paul L. Vasey and Nancy H. Bartlett, “What Can the Samoan ‘Fa’afafine’ Teach Us About the Western Concept of Gender Identity Disorder in Childhood?” Perspectives in Biology and Medicine 50, no. 4 (Autumn 2007): 481–90.

Richard/Alice Novic: See Richard J. Novic, Alice in Genderland: A Crossdresser Comes of Age (iUniverse, 2009).

well-screened trans women: See, for example: Ray Blanchard, “Gender Dysphoria and Gender Reorientation,” in B. W. Steiner, ed., Gender Dysphoria: Development, Research, Management (New York: Plenum Press, 1985): 365–92; Ray Blanchard, “The Case for Publicly Funded Transsexual Surgery,” Psychiatry Rounds 4, no. 2 (Apr. 2000): 4–6. See also Dreger, “Controversy,” 415.

sex reassignment in Canada: Alice D. Dreger, “Response to the Commentaries on Dreger (2008),” Archives of Sexual Behavior 37 (2008): 503–10; see 504.

“become the women they love”: Bailey, Man Who Would Be Queen, p. xii.

paraphilic: Ibid., 171–72.

gatekeepers for sex reassignment: See Joanne Meyerowitz, How Sex Changed: A History of Transsexuality in the United States (Cambridge, MA: Harvard University Press, 2004).

In 1969, one clinician: See Howard J. Baker, “Transsexualism: Problems in Treatment,” American Journal of Psychiatry 125 (1969): 1412–18.

Paul McHugh: See Paul McHugh, “Transgender Surgery Isn’t the Solution,” Wall Street Journal, June 12, 2014, http://online.wsj.com/articles/paul-mchugh-transgender-surgery-isnt-the-solution-1402615120.

Bailey actually criticizes in his book: Bailey, Man Who Would Be Queen, 207.

liposuction on anorexics: See Paul R. McHugh, “Psychiatric Misadventures,” www.lhup.edu/~dsimanek/mchugh.htm (accessed July 26, 2014).

“appropriating this body for themselves”: Janice G. Raymond, The Transsexual Empire: The Making of the She-Male (Boston: Beacon Press, 1979), 104. A new book by feminist Sheila Jeffreys has revised this debate over the relationship of feminism to transgender; see Michelle Goldberg, “What Is a Woman?” The New Yorker, August 4, 2014, http://www.newyorker.com/magazine/2014/08/04/woman-2.

violations of their rights: For an overview of the ongoing history of the violations of the rights of transgender persons, see the Web site of the National Center for Transgender Equality, http://transequality.org.

refers to her “clitoris”: See Novic, Alice in Genderland, 188, 229.

“weird characterizations of us all”: Lynn Conway to Andrea James, Apr. 10, 2003, reproduced in Lynn Conway, “The Bailey Investigation: How It All Began with a Series of E-Mail Alerts,” http://ai.eecs.umich.edu/people/conway/TS/Bailey/Investigation%20start-up/Investigation%20start-up.htm (accessed July 26, 2014) and quoted in Dreger, “Controversy,” 384.

man was quite femme: See Bailey, Man Who Would Be Queen, preface.

not particularly good-looking: Ibid., 180.

well suited for sex work: Ibid., 185.

“Kim still possessed a penis”: Ibid., 182.

tone-dumb: I learned the concept of literal tone dumbness from Stephen Fry, Moab Is My Washpot (New York: Random House, 1997).

twin studies: See, for example, Richard C. Pillard and J. Michael Bailey, “Human Sexual Orientation Has a Heritable Component,” Human Biology 70, no. 2 (1998): 347–65.

“[and those] who have not”: Andrea James, “Invective Against J. Michael Bailey’s ‘The Man Who Would Be Queen.’” Originally published as a page at www.tsroadmap.com in May 2003 and subsequently removed; complete copy obtained from files of J. Michael Bailey and discussed in Dreger, “Controversy,” 368–69.

to the Northwestern Rainbow Alliance: E-mail from Alice Dreger to the Northwestern Rainbow Alliance, May 11, 2006; also discussed in Dreger, “Controversy,” 369.

“The Blog I Write in Fear”: Alice D. Dreger, “The Blog I Write in Fear,” May 13, 2006, www.alicedreger.com/in_fear.html (accessed July 26, 2014); discussed in Dreger, “Controversy,” 369.

writing to Andrea James: Alice Dreger to Andrea James, e-mail May 16, 2006; discussed in Dreger, “Controversy,” 369.

“precious womb turd”: Andrea James to Alice Dreger, e-mail June 1, 2006; discussed in Dreger, “Controversy,” 369.

“We’ll chat in person soon”: Andrea James to Alice Dreger, e-mail May 27, 2006; discussed in Dreger, “Controversy,” 369.

university police: See Dreger, “Controversy,” 369.

“Photos of Lynn”: Lynn Conway, “Photos of Lynn,” http://ai.eecs.umich.edu/people/conway/Photos/Lynn-TN/LC-photos.html (accessed July 26, 2014).

had been nominated: This is discussed in the next chapter.

formal charges made against Bailey: Deirdre McCloskey to Alice Dreger, Jan. 22, 2007, as discussed in Dreger, “Controversy,” 389.

“He wanted what he wanted”: Deirdre N. McCloskey, Crossing: A Memoir (University of Chicago Press, 1999), 18–19.

as it does on a natal woman: In Crossing: A Memoir, McCloskey writes on p. 41, “Men do not get water in their eyes from a shower because the browridge makes it drip beyond their eyelashes. (Deirdre was delighted after her facial operations that she could no longer keep her eyes open under a shower.)”

“While I readily admit to my own autogynephilia”: Andrea James to Anne Lawrence, e-mail Nov. 9, 1998, emphasis added; quoted and discussed in Dreger, “Controversy,” 387–88.

CHAPTER 3: TANGLED WEBS

formal complaints as posted: I review in more detail the charges made against Bailey and analyze their merit in Alice D. Dreger, “The Controversy Surrounding The Man Who Would Be Queen: A Case History of the Politics of Science, Identity, and Sex in the Internet Age,” Archives of Sexual Behavior 37 (2008): 366–421.

Kieltyka had sought out Bailey: Interview with Charlotte Anjelica Kieltyka, Aug. 16, 2006, revised transcript received Sept. 22, 2006; discussed in Dreger, “Controversy,” 372.

she had played a woman: Interview with Charlotte Anjelica Kieltyka, Aug. 17, 2006, revised transcript received Sept. 22, 2006; interview with Charlotte Anjelica Kieltyka, Aug. 21, 2006, revised transcript received Sept. 27, 2006; discussed in Dreger, “Controversy,” 372.

shared the video: Kieltyka also provided me a copy of this tape: Charlotte Anjelica Kieltyka, “Becoming Real: Chuck to Anjelica” (self-produced, 1999).

rituals: Interviews with Kieltyka, Aug. 21 and 22, 2006, revised transcripts received Sept. 27, 2006; discussed in Dreger, “Controversy,” 372–74.

“dress rehearsals”: Interview with Kieltyka, Aug. 17, 2006, revised transcript received Sept. 22, 2006.

feminine foundation of herself: Interview with Kieltyka, Aug. 21, 2006, revised transcript received Sept. 27, 2006; discussed in Dreger, “Controversy,” 374.

in his Human Sexuality class: Interviews with Kieltyka, Aug. 16 and 17, 2006, revised transcripts received Sept. 22, 2006, and interview with J. Michael Bailey, Aug. 8, 2006, revised transcript received Aug. 8, 2006; discussed in Dreger, “Controversy,” 373.

even in the nude: Interview with Kieltyka, Aug. 16, 2006, revised transcript received Sept. 22, 2006; discussed in Dreger, “Controversy,” 407.

including on local television: Interview with Kieltyka, Aug. 16, 2006, revised transcript received Sept. 22, 2006, and J. Michael Bailey to Alice Dreger, e-mail interview, Jan. 17, 2007; discussed in Dreger, “Controversy,” 407, 410. Kieltyka recorded and broadcast a presentation about her life on a local cable access channel, including a segment in which she is sitting in a television studio surrounded by recording equipment, wearing a white bikini, and drinking a cocktail, explaining to the camera that she’s a transgender woman. For that broadcast, she had also chosen to share video of herself pretransition as a man; see Kieltyka, “Becoming Real.”

requests for sex reassignment surgery: Interview with Kieltyka, Aug. 16, 2006, revised transcript received Sept. 22, 2006; discussed in Dreger, “Controversy,” 372.

Bailey thought: Interview with J. Michael Bailey, Aug. 8, 2006, revised transcript received Aug. 8, 2006; discussed in Dreger, “Controversy,” 372–73.

Bailey’s letters: J. Michael Bailey to Alice Dreger, e-mail interviews, Oct. 2 and 3, 2006; as discussed in Dreger, “Controversy,” 372–73.

the newspaper article: Maegan Gibson, “True Selves,” Focus, Daily Northwestern, Feb. 24, 1999, 1, 5.

human sexuality educational videos: Human Sexuality Videoworkshop, 14 modules on CD-ROM, (Boston: Allyn & Bacon, 2004).

Kieltyka did keep trying: Interviews with Kieltyka, Aug. 21 and 22, 2006, revised transcripts received Sept. 27, 2006; discussed in Dreger, “Controversy,” 376.

pseudonym for the book: Bailey to Dreger, Jan. 17, 2007; discussed in Dreger, “Controversy,” 410.

“Cher is a star”: J. Michael Bailey, The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism (Washington, DC: Joseph Henry Press, 2003), 212.

“a sexual fantasy, she says”: Robin Wilson, “‘Dr. Sex’: A Human-Sexuality Expert Creates Controversy with a New Book on Gay Men and Transsexuals,” Chronicle of Higher Education, June 20, 2003, 8.

“doesn’t want her last name used”: Ibid.

“hanged by them”: Interview with Charlotte Anjelica Kieltyka, Sept. 19, 2006, revised transcript received Sept. 22, 2006; also quoted in Dreger, “Controversy,” 388.

“Anjelica, aka Cher”: Anjelica Kieltyka to J. Michael Bailey, May 16, 2003, as quoted in Dreger, “Controversy,” 388.

“field trips” to Chicago: Lynn Conway, “An Investigative Report into the Publication of J. Michael Bailey’s Book on Transsexualism by the National Academies,” http://ai.eecs.umich.edu/people/conway/TS/LynnsReviewOfBaileysBook2.html (accessed July 27, 2014); discussed in Dreger, “Controversy,” 389.

“interviewing Bailey’s research subjects”: Lynn Conway, “Timeline of the Unfolding Events in the Bailey Investigation,” Jan. 6, 2010, http://ai.eecs.umich.edu/people/conway/TS/Bailey/Timeline/Timeline%20spreadsheet.htm (accessed July 27, 2014); version of Dec. 31, 2006, retrieved Jan. 22, 2007, discussed in Dreger, “Controversy,” 389.

Jim Marks: Jim Marks to Alice Dreger, e-mail interview, July 22, 2006, as quoted in Dreger, “Controversy, 396.

McCloskey told Marks: Deirdre McCloskey to Jim Marks, personal communication, Feb. 3, 2004; reproduced at Lynn Conway, “The Gay and Lesbian ‘Lambda Literary Foundation’ Disses All Transsexual Women by Nominating Bailey’s Book for a GLB‘T’ Literary Award!” http://ai.eecs.umich.edu/people/conway/TS/Bailey/Lambda%20Literary%20Foundation.html (accessed July 27, 2014), as quoted in Dreger, “Controversy,” 411.

Marks wasn’t sure what to make of all this: Marks to Dreger, July 22, 2006; quoted in Dreger, “Controversy,” 396.

Marks found: Marks to Dreger, July 22, 2006; quoted in Dreger, “Controversy,” 396–97.

“future publication on this site”: Conway, “Gay and Lesbian ‘Lambda Literary Foundation’”; quoted in Dreger, “Controversy,” 397.

According to Marks: Marks to Dreger, July 22, 2006; quoted in Dreger, “Controversy,” 397.

Marks insisted was not true: Ibid.

that Bailey was autogynephilic: Dreger, “Controversy,” 398.

Lawrence had been fully cleared: Interview with Anne A. Lawrence, Aug. 8, 2006, revised transcript received Aug. 17, 2006; discussed in Dreger, “Controversy,” 395.

“makes a real human connection”: Andrea James to the faculty of the Northwestern University Psychology Department, Sept. 15, 2003; quoted in Dreger, “Controversy,” 398.

“consider moving”: Joan Linsenmeier to Alice Dreger, Aug. 17, 2006; quoted in Dreger, “Controversy,” 397–98.

lawyer told him to shut up: See Dreger, “Controversy,” 393, 404.

Wilson had personally witnessed: See Wilson, “‘Dr. Sex.’”

three terribly sober dispatches: See Robin Wilson, “Transsexual ‘Subjects’ Complain About Professors’ Research Methods,” Chronicle of Higher Education, July 25, 2003, 10; Robin Wilson, “Northwestern U. Psychologist Accused of Having Sex with Research Subject,” Chronicle of Higher Education, Dec. 19, 2003, 17; and Robin Wilson, “Northwestern U. Will Not Reveal Results of Investigation into Sex Researcher,” Chronicle of Higher Education, Dec. 10, 2004, 10.

Wilson’s editor sent me back boilerplate: Bill Horne to Alice Dreger, Aug. 15, 2006; quoted in Dreger, “Controversy,” 394.

Conway refused, as did Juanita: My attempts to get Conway and Juanita to speak on the record are documented in Dreger, “Controversy.”

Bailey as a fall guy: See Dreger, “Controversy,” 386.

putting a human face on autogynephilia: I explain this conclusion further in Dreger, “Controversy,” part 5, “The Merit of the Charges.”

by three trans women: Lynn Conway, ed., “A Second Woman Files Research Misconduct Complaints Against Bailey,” July 14, 2003, http://ai.eecs.umich.edu/people/conway/TS/Bailey/SecondComplaint.html (accessed July 27, 2014); Lynn Conway, ed., “A Third Woman Files Research Misconduct Complaints against Bailey,” July 23, 2003, http://ai.eecs.umich.edu/people/conway/TS/Bailey/ThirdComplaint.html (accessed July 27, 2014); Lynn Conway, ed., “A Fourth Trans Woman Files a Formal Complaint with the Vice-President of Research of Northwestern University Regarding the Research Conduct of J. Michael Bailey,” July 30, 2003, http://ai.eecs.umich.edu/people/conway/TS/Bailey/FourthWomansComplaint.html (accessed July 27, 2014).

not even in the book: See Dreger, “Controversy,” 407.

given him permission to do so: Interview with Charlotte Anjelica Kieltyka, Sept. 19, 2006, revised transcript received Sept. 22, 2006; Lynn Conway, ed., “Documentation of a Formal Complaint About J. Michael Bailey’s Sexual Exploitation of a Research Subject, and of Northwestern University’s Apparent Decision to Not Investigate Such Egregious Misconduct,” http://ai.eecs.umich.edu/people/conway/TS/Bailey/KeyDocuments/Misconduct-12-11-03.html. See also Dreger, “Controversy,” 407.

“most hurtful book of his”: Conway, “Documentation of a Formal Complaint,” quoted in Dreger, “Controversy,” 403.

subsequent divorce: See Dreger, “Controversy,” 403.

Illinois Department of Professional Regulation: Lynn Conway, ed., “Evidence and Complaints Filed Against J. Michael Bailey for Practicing as a Clinical Psychologist Without a License, and Then Subsequently Publishing Confidential Clinical Case-History Information Without Permissions,” Apr. 6, 2004, http://ai.eecs.umich.edu/people/conway/TS/Bailey/Clinical/ClinicalComplaint.html (accessed July 27, 2014). See also Dreger, “Controversy,” 392.

driven home the point: Interview with J. Michael Bailey, Aug. 8, 2006, revised transcript received Aug. 8, 2006; Bailey to Dreger, Oct. 2 and 3, 2006. See also Dreger, “Controversy,” 371–72, 410.

relevant Illinois regulations: Illinois Compiled Statutes, 225 ILCS 15/1, chap. 111, para. 5351. For further analysis and documentation, see Dreger, “Controversy,” 411.

broadcast the claim: Charlotte Anjelica Kieltyka to C. Bradley Moore, July 3, 2003, “Anjelica Kieltyka Files a Formal Complaint . . .” (texts of three formal complaints to Northwestern University), http://ai.eecs.umich.edu/people/conway/TS/Anjelica/Complaint.html (accessed July 27, 2014). See also Conway, “A Second Woman Files”; Conway, “A Third Woman Files”; and Conway, “A fourth Trans Woman Files.” See also Dreger, “Controversy,” 400–402.

IRB regulations: On the history of IRBs, see Laura Stark, Behind Closed Doors; IRBs and the Making of Ethical Research (Chicago: University of Chicago Press, 2011) and see Zachary M. Schrag, Ethical Imperialism: Institutional Review Boards and the Social Sciences, 1965–2009 (Baltimore: Johns Hopkins University Press, 2010).

formalized scientific studies: See Dreger, “Controversy,” 377, 402.

notarized affidavit: Conway, “Documentation of a Formal Complaint”; also quoted in Dreger, “Controversy,” 402–3.

erotic semi-nude photo: See Dreger, “Controversy,” 371.

rare public statement: J. Michael Bailey, “Academic McCarthyism,” Northwestern Chronicle, Oct. 9, 2005, http://archive.today/shRzY (accessed August 29, 2014); discussed in Dreger, “Controversy,” 404.

documentary evidence: Provided by J. Michael Bailey to Alice Dreger, July 20, 2006 and discussed in Dreger, “Controversy,” 404–5.

Deb Bailey: Interview with Deb Bailey, Aug. 9, 2006, no revisions to transcript; and Deb Bailey to Alice Dreger, e-mail interview, Jan. 7, 2007; also documented in Dreger, “Controversy,” 404–5.

“accountable for his actions”: See Conway, “Documentation of a Formal Complaint,” quoted in Dreger, “Controversy,” 403–4.

He was adamant: J. Michael Bailey to Alice Dreger, e-mail interview, July 19, 2006; see also Dreger, “Controversy,” 404.

Juanita wasn’t interested in talking to me: I document my attempts to speak to Juanita in Dreger, “Controversy,” 371.

“he couldn’t get it up”: Interview with Kieltyka, Sept. 21, 2006, revised transcript received Sept. 27, 2006, quoted in Dreger, “Controversy,” 405.

“I wasn’t enthusiastic”: Ibid.

“Followed by narcissistic rage”: For elaboration of Lawrence’s read on the matter, see Anne A. Lawrence, “Shame and Narcissistic Rage in Autogynephilic Transsexualism,” Archives of Sexual Behavior 37, no. 3 (2008): 457–61.

publishing narratives from trans women: See Anne A. Lawrence, Men Trapped in Men’s Bodies: Narratives of Autogynephilic Transsexualism (Doetinchem, Netherlands: Springer, 2013).

Kiira Triea: See Kiira Triea, “Power, Orgasm, and the Psychohormonal Research Unit,” in Intersex in the Age of Ethics, ed. Alice Dreger (Hagerstown, MD: University Publishing Group, 1999): 141–44.

Carey’s piece was published: Benedict Carey, “Criticism of a Gender Theory, and a Scientist Under Siege,” New York Times, Aug. 21, 2007, www.nytimes.com/2007/08/21/health/psychology/21gender.html (accessed July 27, 2014).

McCloskey wrote to the New York Times: Deirdre McCloskey to New York Times, Aug. 24, 2007, www.deirdremccloskey.com/docs/times.pdf (accessed July 27, 2014).

public radio in the Bay Area: “Forum,” KQED, Aug. 22, 2007; transcript at www.alicedreger.com/kqed_forum_transcript.html (accessed July 27, 2014). For a summary of incorrect statements by Roughgarden and my responses to them, see http://alicedreger.com/kqed_forum_corrections.html.

Robin Mathy was filing ethics charges: See footnote on p. 509 of Alice D. Dreger, “Response to the Commentaries on Dreger (2008),” Archives of Sexual Behavior 37 (2008): 503–10; see also Michael Gsovski, “Debate Resumes on Methods of Psych Professor’s Research,” Daily Northwestern, Mar. 18, 2008, http://dailynorthwestern.com/2008/03/18/archive-manual/debate-resumes-on-methods-of-psych-professors-research (accessed July 27, 2014).

CHAPTER 4: A SHOW-ME STATE OF MIND

chronic Lyme disease: See David Grann, “Stalking Dr. Steere over Lyme Disease,” New York Times Magazine, June 17, 2001, www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html.

fibromyalgia: See Alex Berenson, “Drug Approved. Is Disease Real?” New York Times, Jan. 14, 2008, www.nytimes.com/2008/01/14/health/14pain.html.

alleged childhood sexual abuse: This refers to the story of Elizabeth Loftus, whose history I recount in Chapter 9. On her story, see Carol Tavris, “The High Cost of Skepticism,” Skeptical Inquirer 26, no. 4 (July–Aug. 2002): 41–44, http://williamcalvin.com/2002/TavrisArticle.htm.

alien abductions: The book was Susan A. Clancy, Abducted: How People Come to Believe They Were Kidnapped by Aliens (Cambridge, MA: Harvard University Press, 2005).

Ken Sher, my first interviewee: Interview with Ken Sher, Oct. 30, 2008; Sher approved the passages about him on Dec. 3, 2012 (personal e-mail communication).

exceedingly well documented: See, e.g., the special issue, dedicated to the controversy, of American Psychologist 57, no. 3 (Mar. 2002), and Hollida Wakefield, “The Effects of Child Sexual Abuse: Truth Versus Political Correctness,” IPT Journal 16 (2006), www.ipt-forensics.com/journal/volume16/j16_2.htm.

“the Rind paper”: Bruce Rind, Philip Tromovitch, and Robert Bauserman, “A Meta-Analysis Examination of Assumed Properties of Child Sexual Abuse Using College Samples,” Psychological Bulletin 124, no. 1 (July 1998): 22–53.

Sher and Eisenberg had decided: See Kenneth J. Sher and Nancy Eisenberg, “Publication of Rind et al. (1998): The Editors’ Perspective,” American Psychologist 57, no. 3 (Mar. 2002): 206–10.

“or even altered”: Rind, Tromovitch, and Bauserman, “Meta-Analysis,” 47.

NAMbLA: See NAMbLA, North American Man/Boy Love Association, “The Good News About Man/Boy Love” (1999), archived at https://web.archive.org/web/20140728213555/https://www.ipce.info/ipceweb/Documentation/Documents/99-112_nambla_statement.htm.

virtual pitchmen for pedophilia: See Sher and Eisenberg, “Publication.”

Tom Delay: See Ellen Greenberg Garrison and Patricia Clem Kobor, “Weathering a Political Storm: A Contextual Perspective on a Psychological Research Controversy,” American Psychologist 57, no. 3 (Mar. 2002): 165–75.

A vote of 355 to 0: See Garrison and Kobor, “Weathering,” 172.

“that Congress condemns”: House Concurrent Resolution 107 (106th Congress, 1999–2000): “Expressing the sense of Congress rejecting the conclusions of a recent article published by the American Psychological Association that suggests that sexual relationships between adults and children might be positive for children”; passed.

“AND ARE IN ERROR”: Quoted in Sher and Eisenberg, “Publication,” 206.

APA kept Sher and Eisenberg apprised: See Sher and Eisenberg, “Publication,” 209.

“on child welfare and protection issues”: See Garrison and Kobor, “Weathering,” and Wakefield, “Effects.”

subverted in the service of politics: See Scott O. Lilienfeld, “When Worlds Collide: Social Science, Politics, and the Rind et al. (1998) Child Sexual Abuse Meta-Analysis,” American Psychologist 57, no. 3 (Mar. 2002): 176–88.

“scientists in a professional field”: Quoted in Wakefield, “Effects.”

Dr. Laura on the radio: This is also described in Sher and Eisenberg, “Publication,” 209.

“voting for pedophilia”: Sher and Eisenberg, “Publication,” 206, n. 1, emphasis added.

A Natural History of Rape: Randy Thornhill and Craig T. Palmer, A Natural History of Rape: Biological Bases of Sexual Coercion (Cambridge, MA: MIT Press, 2000).

Roughgarden had published: Joan Roughgarden, review of Evolution, Gender, and Rape for Ethology 110, no. 1 (Jan. 2004): 76–78; quotation on p. 77.

“excuse for criminal behavior”: Roughgarden, review, 76.

Craig had told me in advance: Our interview occurred on October 20, 2008, and Craig Palmer approved the passages about him on Oct. 26, 2010 (personal e-mail communication).

in the Sciences: Randy Thornhill and Craig T. Palmer, “Why Men Rape,” Sciences, Jan.–Feb. 2000, 30–36.

“Bill Clinton’s behavior”: Interview with Craig Palmer, Oct. 30, 2008.

Barbara Ehrenreich: Barbara Ehrenreich, “How ‘Natural’ Is Rape?” Time, Jan. 31, 2000, 88.

letter writer to the Los Angeles Times: Doris C. Kagin, letter to the editor, Los Angeles Times, Mar. 13, 2000, E3.

Nashville Tennessean’s: Lawrence Spohn, “‘Can’t Help It’ Theory Sparks Anger for Blaming Biology, Reproductive Instinct When a Man RAPES a Woman,” Nashville Tennessean, Jan. 30, 2000.

Manchester Guardian: Michael Ellison, “The Men Can’t Help It,” Manchester Guardian, Jan. 25, 2000, 4.

Globe and Mail: “Are Men Natural-Born Rapists? Readers Weigh In,” Toronto Globe and Mail, Feb. 12, 2000, D19.

Susan Brownmiller: See, for example, the interviews with Brownmiller in Janice D’Arcy, “Book Offers Radical Take on Rape,” Hartford Courant, Feb. 6, 2000, A1, A8; and Martin Miller, “Rape,” Los Angeles Times, Feb. 20, 2000, http://articles.latimes.com/2000/feb/20/news/cl-642.

Brownmiller’s highly influential opinion: See Susan Brownmiller, Against Our Will: Men, Women, and Rape (New York: Martin Secker & Warburg, 1975).

a pamphlet distributed: Rape Prevention Education Program, “Resources Against Sexual Assault,” University of California–Davis, Police Department, n.d.

messages left on Randy’s answering machine: Interview with Randy Thornhill, Oct. 21, 2008, notes corrected and approved, Oct. 22, 2008.

Elizabeth Eckstein: Elizabeth Eckstein, “Rape: A Survivor’s View,” Dallas Morning News, Lifestyles, Feb. 2, 2000.

interview with the Boston Herald: Scripps Howard, “Study Says Rape Has Its Roots in Evolution,” Boston Herald, Jan. 11, 2000, 3.

from a guy serving time: letter provided by Craig Palmer from his personal files.

Joelle Ruby Ryan: The exchange occurred on the WMST-L Listserv. Ryan’s panel proposal was posted on Sept. 17, 2007; I responded on Sept. 19. The exchange continued and is available in the WMST-L archives at listserv.umd.edu.

Conway functioned as Ryan’s “mentor”: See Lynn Conway, “Report on Joelle Ruby Ryan’s NWSA Panel Discussion published in the Point Foundation’s Mentoring Messenger, Jan. 10, 2009, http://ai.eecs.umich.edu/people/conway/TS/News/US/NWSA/PF/Point_Foundation_Article_12-08.htm.

New York Times coverage: Benedict Carey, “Criticism of a Gender Theory, and a Scientist Under Siege,” New York Times, Aug. 21, 2007, www.nytimes.com/2007/08/21/health/psychology/21gender.html.

in my allotted fifteen minutes: The paper I delivered was entitled “Activism in the Bailey Transsexualism Controversy Compared to Intersex Patients Rights Activism” and was presented on June 21, 2007.

who was at her side but Juanita: The page Lynn Conway mounted about the session included a photograph of Conway behind the video camera with Juanita sitting behind her: Conway, “Report.”

Panelists repeatedly defended: Lynn Conway provides the papers and links to videos of the individual presentations; Lynn Conway, “Joelle Ruby Ryan Chairs NWSA Panel on Resisting Transphobia in Academia: The Event Alice Dreger Failed to Stop,” June 27, 2008, http://ai.eecs.umich.edu/people/conway/TS/News/US/NWSA/NWSA_panel_on_resisting_transphobia_in_academia.html.

interesting critiques of my work: This was Katrina Rose; links to her paper and presentation, ibid.

“Rosa Lee Klaneski”: The transcript of this text, taken from the video made, was provided to me by Rosa Lee Klaneski for this invited article: Alice Dreger, “In the Service of Galileo’s Ghost: A Short Guide to History, Assault, and Ideology,” in History of Science Society Newsletter 38, no. 4 (Oct. 2009). Rosa approved the content of that article on Aug. 19, 2009 (personal e-mail communication).

“Alice, honey”: April Herndon and Rosa Lee Klaneski corroborated this account in personal e-mail communications of November 21, 2012.

woman who had been Craig Palmer’s dean: I later learned from Craig Palmer that the dean who defended him was Elizabeth Grobsmith.

CHAPTER 5: THE ROT FROM WITHIN

Darkness in El Dorado: Patrick Tierney, Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon (New York: Norton, 2000).

Terence Turner and Leslie Sponsel: See Terence Turner and Leslie Sponsel, letter to Louise Lamphere and Don Brenneis, “Re: Scandal About to Be Caused by Publication of Book by Patrick Tierney (Darkness in El Dorado. New York. Norton. Publication date: October 1, 2000),” http://anthroniche.com/darkness_documents/0055.htm. Many of the documents pertaining to the Tierney-Chagnon controversy are archived at the Anthropological Niche of Douglas W. Hume, http://anthroniche.com/darkness-in-el-dorado.html.

hardly Turner and Sponsel’s first attempt: I discuss this in the article I published on this controversy; see Alice Dreger, “Darkness’s Descent on the American Anthropological Association: A Cautionary Tale,” Human Nature 22, no. 3 (2011): 225–46.

The Guardian: See Paul Brown, “Scientist ‘Killed Amazon Indians to Test Race Theory,’” The Guardian, Sept. 23, 2000, www.theguardian.com/world/2000/sep/23/paulbrown.

New Yorker article: Patrick Tierney, “The Fierce Anthropologist,” New Yorker, Oct. 9, 2000, 50–61.

formal invitation to defend himself: See Dreger, “Darkness’s Descent,” 238–39.

various other scholarly bodies: Bruce Alberts, “Setting the Record Straight Regarding Darkness in El Dorado,” Washington, DC, National Academy of Sciences, Nov. 9, 2000, http://anthroniche.com/darkness_documents/0538.htm; American Society of Human Genetics, “Response to Allegations Against James V. Neel in Darkness in El Dorado, by Patrick Tierney,” American Journal of Human Genetics 70, no. 1 (Jan. 2002): 1–10; Max P. Baur, the IGES-ELSI Committee, et al., “Commentary on Darkness in El Dorado by Patrick Tierney,” Genetic Epidemiology 21, no. 2 (Sept. 2001), 81–104; Society for Visual Anthropology, “Statement Approved by the Board of Directors and Unanimously Passed by the Membership of the Society for Visual Anthropology,” Nov. 17, 2000, http://anthroniche.com/darkness_documents/0376.htm.

University of Michigan: Nancy Cantor, “Statement from University of Michigan Provost Nancy Cantor on the Book, Darkness in El Dorado, by Patrick Tierney,” (Nov. 13, 2000), http://ns.umich.edu/Releases/2000/Nov00/r111300a.html.

Susan Lindee: Telephone interview with Susan Lindee, Dec. 12, 2008; approved revision received Dec. 15, 2008.

issued an open letter: See Lindee’s letter to colleagues, Sept. 21, 2000, in Edward H. Hagen, Michael E. Price, and John Tooby, “Preliminary Report on Darkness in El Dorado,” Department of Anthropology, University of California–Santa Barbara (unpublished, 2001), http://www.angelfire.com/sk2/title/ucsbpreliminaryreport.pdf, 61–62. In her letter, Lindee had also indicated she had found a telegram showing that Neel had obtained permission from the Venezuelan government to conduct vaccinations, but she later withdrew that claim after further review of the available evidence.

Thomas Headland: See remarks by Thomas Headland, open-microphone session, American Anthropological Association meeting, Nov. 16, 2000. See also Thomas N. Headland, “When Did the Measles Epidemic Begin Among the Yanomami?” Anthropology News 42, no. 1 (2001), 15–19, www.sil.org/~headlandt/measles1.htm.

Diane Paul and John Beatty: Diane Paul and John Beatty, “James Neel, Darkness in El Dorado, and Eugenics: The Missing Context,” Society for Latin American Anthropology (electronic newsletter), no. 17 (Nov. 1, 2000), http://anthroniche.com/darkness_documents/0380.htm.

portrayal of Neel as a Nazi-like eugenicist: Ibid.; Susan Lindee, letter to American Anthropological Association, Nov. 16, 2000, read into the record, open-microphone session, American Anthropological Association meeting, Nov 16, 2000, retrieved from audio recordings and transcripts; Robert S. Cox, “Salting Slugs in the Intellectual Garden: James V. Neel and Scientific Controversy in the Information Age,” Mendel Newsletter, Feb. 2001, www.amphilsoc.org/mendel/2001.htm#slugs.

before Chagnon was even born: For an example, see “Letter from Professor Jane Lancaster,” in Hagen, Price, and Tooby, Preliminary Report, pp. 79–80.

“swashbuckling misogynist”: Open-microphone session, American Anthropological Association, Nov 16, 2000, audio recordings and transcripts. The phrase “swashbuckling misogynist” comes from the remarks of William Vickers.

spreading Ebola around Africa: This claim was made by Omara Ben Abe in his remarks at the open-microphone session, ibid.

Some anthropologists did try to fight back: See John Tooby, “Jungle Fever,” Slate (Oct. 25, 2000), http://www.slate.com/articles/news_and_politics/hey_wait_a_minute/2000/10/jungle_fever.html, and see Hagen, Price, and Tooby, Preliminary Report.

launched a referendum: American Anthropological Association, “Referendum on Darkness in El Dorado & Danger to Immunization Campaign,” adopted Nov. 2003, http://www.aaanet.org/cmtes/ethics.Referendum-on-Darkness-in-El-Dorado-Task-Force.cfm?renderforprint=1.

ratio of 11 to 1: Approximately 14.5 percent of those eligible to vote on this AAA referendum did so: Kimberley Baker, AAA section & governance coordinator, to Alice Dreger, personal e-mail communication, Jan. 4, 2011; quoted in Dreger, “Darkness’s Descent,” 229.

another referendum: American Anthropological Association, “Referendum #3: To Rescind the El Dorado Task Force Report” (2005), http://www.aaanet.org/stmts/05ref_eldorado.htm.

Task Force Report: American Anthropological Association, El Dorado Task Force papers, submitted to the Executive Board as a final report May 18, 2002, 2 vols. (Washington, D.C.: American Anthropological Association, 2002). As noted below, the Report was eventually removed from the AAA Web site but is still available (along with a treasure trove of related documents) at the AnthroNiche Web site of Douglas W. Hume. See http://anthroniche.com.darkness-in-el-dorado/archived-resources/position-statements.html.

ratio of about 2.5 to 1: Approximately 11 percent of those eligible to vote did so; Kimberley Baker, AAA section & governance coordinator, to Dreger, personal e-mail communication, Jan. 4, 2011;quoted in Dreger, “Darkness’s Descent,” 229.

to kill each other: See the remarks by Davi Kopenawa in vol. 2, p. 25, of the Task Force Report.

Chagnon’s story: Interview with Napoleon A. Chagnon, Traverse City, Michigan, Jan. 4–5, 2009; approved version returned Jan. 22, 2009. I asked Napoleon Chagnon to check all personal material about him in this and the next chapter not otherwise included in approved versions of interview notes, and he did so, confirming the material on Oct. 20, 2012.

Chagnon’s 1968 monograph: Napoleon Chagnon, Yanomamö: The Fierce People (New York: Holt, Rinehart & Winston, 1968).

South American anthropologists: Interview with Napoleon Chagnon, Jan. 4–5, 2009; see also Dreger, “Darkness’s Descent,” 227–28.

Chagnon wrote to Neel: Interview with Napoleon Chagnon, Jan. 4–5, 2009; the letter from Chagnon to Neel and Roche was dated Dec. 2, 1996 (copy provided by Napoleon Chagnon).

YANOMAMA-1968-INSURANCE: Lindee mentioned this folder in her Sept. 21, 2000, letter to colleagues, referenced above.

he had essentially withdrawn the data: See Raymond Hames, “The Political Uses of Ethnographic Description,” in Yanomami: The Fierce Controversy and What We Can Learn from It, ed. Robert Borofsky (Los Angeles: University of California Press, 2005): 119–35.

Ed Hagen, Michael Price, and John Tooby: See Tooby, “Jungle Fever,” and see Hagen, Price, and Tooby, Preliminary Report.

when Wilson was presenting: This story was recounted to me by Chagnon during our January 4-5, 2009, interview and also by Edward O. Wilson in our telephone interview on Aug. 24, 2009.

AAA meeting in the 1970s: Chagnon also tells this story in Noble Savages: My Life Among Two Dangerous Tribes—the Yanomamö and the Anthropologists (New York: Simon & Schuster, 2013), 384.

Margaret Mead and Samoa: Derek Freeman, Margaret Mead and Samoa: The Making and Unmaking of an Anthropological Myth (Cambridge, MA: Harvard University Press, 1983).

The Fateful Hoaxing of Margaret Mead: Derek Freeman, The Fateful Hoaxing of Margaret Mead: A Historical Analysis of Her Samoan Research (Boulder, CO: Westview Press, 1999).

“in the groves of Academe”: Freeman as quoted in Paul Shankman, The Trashing of Margaret Mead: Anatomy of an Anthropological Controversy (Madison: University of Wisconsin Press, 2009), 10.

fiction he had spun as nonfiction: For a complete account of Freeman’s mistreatment of Mead, see Shankman, Trashing.

“collected throughout her fieldwork”: Martin Orans, Not Even Wrong: Margaret Mead, Derek Freeman, and the Samoans (Novato, CA: Chandler & Sharp, 1996), 99.

“from the quicksand of controversy”: Shankman, Trashing, 19.

“over 40% were sexually active”: Paul Shankman, “The ‘Fateful Hoaxing’ of Margaret Mead: A Cautionary Tale,” Current Anthropology 54, no. 1 (Feb. 2013), 51–70; quotation from p. 59.

“address important public issues”: Shankman, Trashing, 108.

“crucial junctures in his argument”: Ibid., 12.

get the informant to turn on Mead: Shankman, “‘Fateful Hoaxing.’”

“these two women in Mead’s field notes”: Ibid., 59.

even to himself: Shankman, Trashing, 60–61.

threatened those who did: Ibid., 38.

“was a Soviet agent”: Ibid., 54.

“but we can’t say it!”: Ibid., 56.

CHAPTER 6: HUMAN NATURES

in anthropology or journalism: See Alice Dreger, “Darkness’s Descent on the American Anthropological Association: A Cautionary Tale,” Human Nature 22 (2011): 225–46.

The Highest Altar: Patrick Tierney, The Highest Altar: The Story of Human Sacrifice (New York: Viking, 1989).

Chicago Public Radio: Interview of Patrick Tierney by Victoria Lautman on WBEZ Chicago (Nov. 22, 2000), transcribed by Valerie Thonger.

previous scholars who had looked: See, e.g., Edward H. Hagen, Michael E. Price, and John Tooby, “Preliminary Report on Darkness in El Dorado,” Department of Anthropology, University of California–Santa Barbara (unpublished, 2001), http://www.angelfire.com/sk2/title/ucsbpreliminaryreport.pdf.

“named Marcel Roche”: Patrick Tierney, Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon (New York: Norton, 2001), 60.

New Yorker article: Patrick Tierney, “The Fierce Anthropologist,” New Yorker, Oct. 9, 2000, 50–61; see p. 57.

article Chagnon had coauthored: James V. Neel, Willard R. Centerwall, Napoleon A. Chagnon, and H. L. Casey, “Notes on the Effects of Measles and Measles Vaccine in a Virgin-Soil Population of South American Indians,” American Journal of Epidemiology 91, no. 4 (1970): 418–29.

Yanomami Warfare: R. Brian Ferguson, Yanomami Warfare: A Political History (Sante Fe, NM: School of American Research Press, 1995).

Ferguson told me: Telephone interview with R. Brian Ferguson, July 28, 2009; corrections received Oct. 1 and 20, 2009.

“important resource for my research”: Tierney, Darkness, xvii.

confirmed in an e-mail: Martins to Dreger, personal e-mail communication, June 5, 2009; quoted in Dreger, “Darkness’s Descent,” 231.

Chagnon had written to Hames: Napoleon A. Chagnon to Raymond Hames, personal e-mail communication, Nov. 6, 1995; quoted with permission in Dreger, “Darkness’s Descent,” 231.

“appear to be deliberately fraudulent”: Hagen, Price, and Tooby, “Preliminary Report,” 1.

Turner was regularly making flight connections: Terence Turner, telephone interview with Alice Dreger, Feb. 4, 2009; approved notes returned Feb. 8, 2009.

Turner acknowledged to me: Ibid.

in part to go after Chagnon: See, e.g., Lêda Leitão Martins, “On the Influence of Anthropological Work and Other Considerations on Ethics,” Public Anthropology: Engaging Ideas, May 27, 2001, http://anthroniche.com/darkness_documents/0480.htm.

Martins had publicly taken Chagnon to task: For Martins’s use of the truncated quotation, see Martins, “On the Influence.” For a full translation of the quotation, which originally appeared in the Brazilian magazine Veja, see Robert Borofsky, ed., Yanomami: The Fierce Controversy and What We Can Learn from It (Los Angeles: University of California Press, 2005), 309.

Salesian missionaries, with whom he had come to blows: These disputes are discussed in Napoleon Chagnon, Noble Savages: My Life Among Two Dangerous Tribes—the Yanomamö and the Anthropologists (New York: Simon & Schuster, 2013).

on handout tables at an AAA conference: See Robin Fox, “Evil Wrought in the Name of Good,” Anthropology Newsletter 35 (Mar. 1994): 2; Eric R. Wolf, “Demonization of Anthropologists in the Amazon,” Anthropology Newsletter 35 (Mar. 1994), 2.

distributed by the Salesians: Frank A. Salamone, “Theoretical Reflections on the Chagnon-Salesian Controversy,” in Frank A. Salamone and Walter R. Adams, eds., Explorations in Anthropology and Theology (Lanham, MD: University Press of America, 1997), 91–112.

“Last Tribes of El Dorado”: Patrick Tierney, “Last Tribes of El Dorado: The Gold Wars in the Amazon Rain Forest” (scheduled for New York: Viking, 1994, apparently never published; page citations are from bound advance uncorrected proofs obtained via interlibrary loan).

Viking wouldn’t give: I discuss this in Dreger, “Darkness’s Descent,” 234.

pass himself off as a Chilean gold miner: Tierney, “Last Tribes,” 29, 75, 87, 88, 131.

carried mercury into the rain forest: Ibid., 71.

illegally purchased a shotgun: Ibid, 71.

without first undergoing appropriate quarantine: Ibid., 172, 181.

without first obtaining the required legal permission: Ibid., 19, 124, 127. Tierney may have felt he was justified in doing this because he seems to have seen FUNAI as hopelessly corrupt; see pp. 182–83, 205, 210.

self-confessed murderers: Ibid., 69, 115, 138, 149, 163, 396.

gotten another man killed: Ibid., 327.

housed, fed, protected, and encouraged by local Roman Catholic priests: Ibid., 30, 50, 120, 216, 229, 231, 234, 272, 297, 298.

Father Saffirio responded: Interview by Alice Dreger of Giovanni Saffirio, Cleveland, July 8, 2009; approved notes received Aug. 12, 2009.

“in Roraima”: Ibid.

“big picture of a fine scholar”: Ibid.

Frechione informed me: Interview by Alice Dreger of John Frechione, Pittsburgh, July 8, 2009; approved notes returned July 30, 2009.

2001 interview with Brandon Centerwall: John Frechione interview of Brandon S. Centerwall, Oct. 27, 2001, http://anthroniche.com/darkness_documents/0102.htm.

Turner had Brandon on record: Regarding the additional supporting evidence from Terence Turner, see Dreger, “Darkness’s Descent,” 232–33.

suggesting that Humbert Humbert: Brandon S. Centerwall, “Hiding in Plain Sight: Nabokov and Pedophilia,” Texas Studies in Literature and Language 32, no. 3 (Fall 1990), 468–84.

I wrote to ask him to confirm: Alice Dreger to Brandon Centerwall, personal e-mail communication, Feb. 11, 2009.

I wrote again five days later: Alice Dreger to Brandon Centerwall, personal e-mail communication, Feb. 16, 2009.

“or sharing it with others”: Brandon Centerwall to Alice Dreger, personal e-mail communication, Feb. 18, 2009.

His four-page letter: Brandon Centerwall to Alice Dreger, personal communication, Feb. 18, 2009, e-mail received Feb. 20, 2009.

teaming up with Andrew Wakefield: Interview by Dreger of Frechione.

University of Pittsburgh: I wrote to the University of Pittsburgh on July 7, 2009. A response came from Kathleen M. Dewalt on July 23, and I answered on July 27. On July 30, Dewalt wrote to say Tierney “is not currently appointed.” I answered on July 31: “Because your message of July 23 used the present tense for Patrick Tierney’s appointment at the Center for Latin American Studies, I take it that the ending date of the appointment can be noted in my work as late July, 2009. . . . I assume also your message means Mr. Tierney no longer has any appointment with the University of Pittsburgh. If I have any of this incorrect, please let me know. If I do not hear from you further, I’ll assume I have these facts right.” Dewalt did not correct my understanding.

Robert Cox: Robert S. Cox, “Salting Slugs in the Intellectual Garden: James V. Neel and Scientific Controversy in the Information Age,” Mendel Newsletter, Feb. 2001, www.amphilsoc.org/mendel/2001.htm#slugs.

Charlie took me down to the stacks: This visit occurred on June 30, 2009. Charles Greifenstein reviewed my draft description of this visit and in reply suggested no changes except perhaps mentioning more of the security aspects of the APS archive (Charles Greifenstein to Alice Dreger, personal e-mail communication, Jan. 26, 2011).

James Neel to Mr. Hobert E. Lowrance: James V. Neel to Hobert E. Lowrance, Mission Aviation Fellowship, Apr. 4, 1968, copy in Neel papers, American Philosophical Society, Philadelphia.

Thomas Headland had confirmed: See Thomas N. Headland, “When Did the Measles Epidemic Begin Among the Yanomami?” Anthropology News 42, no. 1 (2001), 15–19, www.sil.org/~headlandt/measles1.htm.

Peacock Commission: James Peacock, Janet Chernela, Linda Green, Ellen Gruenbaum, Philip Walker, Joe Watkins, and Linda Whiteford, “Report to Louise Lamphere, President of the American Anthropological Association, and the Executive Board of the American Anthropological Association: Recommendation for Investigation of Darkness in El Dorado,” known as the Peacock Report, Jan. 21, 2001, copy provided to me by Raymond Hames, now retrievable at http://anthroniche.com/darkness_documents/0612.pdf.

When Hames resigned: Raymond Hames, “My Resignation Letter” (from El Dorado Task Force), 2002, http://anthroniche.com/darkness_documents/0514.htm; Raymond Hames telephone interview with Alice Dreger, June 23, 2009; approved version returned July 6, 2009.

They had so rushed it: Peacock et al., “Peacock Report,” 3: “In order to meet the deadline of January 22 for circulation of reports to the Executive Board, this report is submitted without explicit approval by all members of the Task Force of this final draft.”

Trudy Turner told me: Trudy R. Turner, telephone interview with Alice Dreger, Aug. 24, 2009; approved version returned Sept. 16, 2009.

Janet Chernela: Janet Chernela, telephone interview with Alice Dreger, Aug. 10, 2009, approved notes returned Aug. 15, 2009.

Yanomamö spokesperson who claimed: This is discussed in Dreger, “Darkness’s Descent,” 239.

Jane Hill: Jane Hill, telephone interview with Alice Dreger, July 15, 2009; approved version received July 16, 2009.

“I don’t remember the circumstances”: Ibid.

batch of photocopies: Obtained via e-mail from Sarah Hrdy, Nov. 6, 2009.

gave me permission: Hill provided permission via e-mail to me on Nov. 6, 2009.

“Burn this message”: Jane Hill to Sarah Hrdy, personal e-mail communication, Apr. 15, 2002; used with permission. Also reproduced in Dreger, “Darkness’s Descent,” 237.

Louise Lamphere: I note in Dreger, “Darkness’s Descent,” 240, that “I asked Lamphere to confirm or deny this on the record, and she has not.”

“disagreed with their theoretical bent”: Francesca Bray to Alice Dreger, personal e-mail communication, Oct. 9, 2009, used with permission.

HBES meeting: Alice Dreger, “Darwin’s Dangerous Critics: Evolutionary Biology and Identity Politics in the Internet Age,” paper presented at annual meeting, Human Behavior and Evolution Society, California State University–Fullerton, May 30, 2009.

At UCSB: See Hagen, Price, and Tooby, Preliminary Report.

University of Michigan: See Nancy Cantor, “Statement from University of Michigan Provost Nancy Cantor on the Book, Darkness in El Dorado, by Patrick Tierney,” Nov. 13, 2000, http://ns.umich.edu/Releases/2000/Nov00/r111300a.html.

Chuck Roselli: See John Schwartz, “Of Gay Sheep, Modern Science and Bad Publicity,” New York Times, Jan. 25, 2007, www.nytimes.com/2007/01/25/science/25sheep.html.

twenty thousand e-mails: This account is based in part on interviews with Roselli and Newman: Charles Roselli, telephone interview with Alice Dreger, Nov. 5, 2008, approved notes received Nov. 8, 2008; Jim Newman, telephone interview with Alice Dreger, Oct. 23, 2008, approved notes received Nov. 8, 2008. Roselli and Newman also reviewed a draft of this section on Oct. 11, 2012, and agreed the representation is accurate.

“defend researchers this way”: Interview with Newman.

“‘back to work’”: Ibid.

CHAPTER 7: RISKY BUSINESS

promoting a high-risk drug regimen: See Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine,” Journal of Bioethical Inquiry 9, no. 3 (2012): 277–94. For examples of New’s clinic’s promotion of the intervention, see “Prenatal Diagnosis and Treatment of Congenital Adrenal Hyperplasia,” Maria New Children’s Hormone Foundation, www.newchf.org/testing.php (accessed July 30, 2014). See also Elizabeth Kitzinger, “Prenatal Diagnosis & Treatment for Classical CAH,” CARES Foundation Newsletter 2, no. 1 (Winter 2003): 15, www.caresfoundation.org/productcart/pc/news_letter/winter02-03_page_9.htm. See also the discussion of Maria New’s 2001 presentation below.

Dr. Maria New: See “Biography: Dr. Maria Iandolo New,” at http://www.nlm.nih.gov/changingthefaceofmedicine/physicians/biography_234.html.

recommend the intervention: See, for example, Kitzinger, “Prenatal Diagnosis,” and the discussion of New’s 2001 presentation below. The CARES (Congenital Adrenal Hyperplasia Research, Education & Support) Foundation has also enabled New’s promotion of prenatal dexamethasone for CAH by, for example, posting New’s biography calling hers “the only large center that provides prenatal diagnosis of CAH and prenatal treatment of affected females to prevent genital ambiguity,” at www.caresfoundation.org/productcart/pc/scientific_medical.html.

“found safe for mother and child”: See “Prenatal Diagnosis and Treatment,” Maria New Children’s Hormone Foundation.

studies of efficacy and long-term safety: For a review of how little was actually known about the safety and efficacy of prenatal dexamethasone for CAH in 2010, see Mercè M. Fernández-Balsells et al. “Prenatal Dexamethasone Use for the Prevention of Virilization in Pregnancies at Risk for Classical Congenital Adrenal Hyperplasia Because of 21-Hydroxylase (CYP21A2) Deficiency: A Systematic Review and Meta-Analyses,” Clinical Endocrinology 73, no. 4 (2010): 436–44. This article was published after the OHRP and FDA investigations (discussed in the next chapter) were completed, but the absence of data that it demonstrates was readily apparent to anyone who conducted a basic medical literature search.

changing brain development: See, for example, Hideo Uno et al. “Neurotoxicity of Glucocorticoids in the Primate Brain,” Hormones and Behavior 28, no. 4 (Dec. 1994): 336–48. See also the concerns raised in Svetlana Lajic, Anna Nordenström, and Tatya Hirvikoski, “Long-Term Outcome of Prenatal Treatment of Congenital Adrenal Hyperplasia,” in Christa E. Flück and Walter L. Miller, eds., Disorders of the Human Adrenal Cortex (Basel: Karger, 2008), 82–98. For a discussion of concerns from animal studies about prenatal dexamethasone increasing cardiovascular disease risk, see Svetlana Lajic, Anna Nordenström, and Tatya Hirvikoski, “Long-Term Outcome of Prenatal Dexamethasone Treatment of 21-Hydroxylase Deficiency,” Endocrine Development 20 (2011): 96–105.

“the only clinic in the United States”: See “Prenatal Diagnosis and Treatment,” Maria New Children’s Hormone Foundation; and Kitzinger, “Prenatal Diagnosis & Treatment for Classical CAH.”

funding to study, retrospectively: Evidence of the outcomes study was readily available: “Determining the Long-Term Effects of Prenatal Dexamethasone Treatment in Children With 21-Hydroxylase Deficiency and Their Mothers,” ClinicalTrials.gov, http://clinicaltrials.gov/ct2/show/NCT00617292.

“have not been determined”: Ibid. (Emphasis added)

large “accumulated” clinical population: See p. 2 of M. I. New, “Androgen metabolism in childhood,” grant application R01 HD00072-33A1 (approved), National Institutes of Health (New York: Cornell University Medical College, 1996) where New refers to the “large population of prenatally-treated infants” she had “accumulated” for study.

trying to put a stop: See Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

a complete absence of any properly controlled scientific studies: This was to be confirmed in the systematic review and meta-analysis published later that year by Fernández-Balsells et al., “Prenatal Dexamethasone.” There has been no placebo-controlled trial of prenatal dexamethasone for CAH and no trials with outcomes judged by independent observers. While the Swedish team has performed a prospective study, New’s U.S. group has tracked outcomes past birth only retrospectively, typically using low-level techniques like phone surveys and questionnaires rather than physical examinations. For an example of the phone survey approach, see Maria I. New et al. “Extensive Personal Experience: Prenatal Diagnosis for Congenital Adrenal Hyperplasia in 532 Pregnancies,” Journal of Clinical Endocrinology & Metabolism 86, no. 12 (2001): 5651–57. For an example of the use of retrospective questionnaires, see Heino F. Meyer-Bahlburg et al., “Cognitive and Motor Development of Children with and without Congenital Adrenal Hyperplasia after Early-Prenatal Dexamethasone,” Journal of Clinical Endocrinology & Metabolism 89, no. 2 (2004): 610–14.

see if the intervention works in animals: For example, the FDA Web site assures consumers that, in the long process toward approval for drug indications, “companies, research institutions, and other organizations that take responsibility for developing a drug . . . must show the FDA results of preclinical testing in laboratory animals and what they propose to do for human testing.” See Food and Drug Administration, “The FDA’s Drug Review Process: Ensuring Drugs Are Safe and Effective,” www.fda.gov/drugs/resourcesforyou/consumers/ucm143534.htm. In 1964, the Declaration of Helsinki codified as its first Basic Principle that clinical research “should be based on laboratory and animal experiments or other scientifically established facts.” Declaration of Helsinki, 18th World Medical Assembly, Helsinki, 1964.

The Swedish data: See Tatya Hirvikoski, et al., “Cognitive Functions in Children at Risk for Congenital Adrenal Hyperplasia Treated Prenatally with Dexamethasone,” Journal of Clinical Endocrinology & Metabolism 92 (2007): 542–48. It’s interesting that an early report from New’s group on cognitive outcomes hinted at similar possible adverse effects: see P. D. Trautman et al., “Effects of Early Prenatal Dexamethasone on the Cognitive and Behavioral Development of Young Children: Results of a Pilot Study,” Psychoneuroendocrinology 20, no. 4 (1995): 439–49. See below for a discussion of later outcomes studies by New’s group.

The Swedish group had found: See Svetlana Lajic et al., “Long-Term Somatic Follow-up of Prenatally Treated Children with Congenital Adrenal Hyperplasia,” Journal of Clinical Endocrinology & Metabolism 83, no. 11 (1998): 3872–80.

between 1 in 10,000 and 1 in 15,000: Maguelone G. Forest, “Recent Advances in the Diagnosis and Management of Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency,” Human Reproduction Update 10, no. 6 (Nov./Dec. 2004): 469–85. The NIH gives the frequency as “about 1 in 10,000 to 1 in 18,000” at MedLine Plus; see www.nlm.nih.gov/medlineplus/ency/article/000411.htm (accessed July 30, 2014).

drew patients from around the world: Chapter 9 includes a review of what numbers New reported to NIH.

most common cause of congenital ambiguous genitalia: National Institutes of Health, “Intersex,” MedLine Plus, www.nlm.nih.gov/medlineplus/ency/article/001669.htm (accessed July 30, 2014). CAH actually comes in a number of different forms, and not all forms lead to masculinization in genetic females. The main type we’re interested in here is the form called 21-hydroxylase deficiency.

substantial natural variation: See Medline Plus, “Congenital Adrenal Hyperplasia,” at http://www.nlm.nih.gov/medlineplus/ency/article/000411.htm.

ultimately identify as male: Heino F. L. Meyer-Bahlburg, “What Causes Low Rates of Child-Bearing in Congenital Adrenal Hyperplasia?” Journal of Clinical Endocrinology and Metabolism 84, no. 6 (June 1999): 1844–47; Heino F. L. Meyer-Bahlburg et al., “Gender Development in Women with Congenital Adrenal Hyperplasia as a Function of Disorder Severity,” Archives of Sexual Behavior 35, no. 6 (Dec. 2006): 667–84; and Arianne B. Dessens, Froukje M. E. Slijper, and Stenvert L. S. Drop, “Gender Dysphoria and Gender Change in Chromosomal Females with Congenital Adrenal Hyperplasia,” Archives of Sexual Behavior 34, no. 4 (Aug. 2005): 389–97.

opted to abort: Selective abortion of females with CAH is reported, for example, in Arlene B. Mercado et al., “Extensive Personal Experience: Prenatal Treatment and Diagnosis of Congenital Adrenal Hyperplasia Owing to Steroid 21-Hydroxylase Deficiency,” Journal of Clinical Endocrinology and Metabolism 80, no. 7 (July 1995): 2014–20.

A 1984 paper: Michel David and Maguelone G. Forest, “Prenatal Treatment of Congenital Adrenal Hyperplasia Resulting from 21-Hydroxylase Deficiency,” Journal of Pediatrics 105, no. 5 (Nov. 1984): 799–803.

making the intervention available: See Chapter 9 for a review of the history of New’s use of prenatal dexamethasone.

Dr. New tells the families: Maria I. New, lecture presented at conference for CARES Foundation, Weill Medical College of Cornell University, New York, Nov. 14, 2001.

“done well in very few centers”: Ibid.

giving birth prematurely: Concerned researchers have been tracking possible unintended consequences of the use of prenatal steroids for premature birth risk; see, for example, National Institutes of Health Consensus Development Panel, “Antenatal Corticosteroids Revisited: Repeat Courses,” Statement of NIH Consensus Development Conference, Aug. 17–18, 2000, Obstetrics and Gynecology 98, no. 1 (2001): 144–50; see also Noel P. French et al. “Repeated Antenatal Corticosteroids: Effects on Cerebral Palsy and Childhood Behavior,” American Journal of Obstetrics and Gynecology 190, no. 3 (Mar. 2004): 588–95.

families steadily learned: For an example of a woman knowing to call Maria New, “a total stranger,” as soon as she was pregnant with a fetus who might have CAH, see Catherine Elton, “A Prenatal Treatment Raises Questions of Medical Ethics,” Time, June 18, 2010, http://content.time.com/time/health/article/0,8599,1996453,00.html.

pregnancy category C: FDA Pregnancy Categories, http://depts.washington.edu/druginfo/Formulary/Pregnancy.pdf (accessed July 30, 2014).

“despite potential risks”: Ibid.

the DES disaster: For a history of DES, see Nancy Langston, Toxic Bodies: Hormone Disruptors and the Legacy of DES (New Haven, CT: Yale University Press, 2010).

study published in 1953: William J. Dieckmann et al., “Does the Administration of Diethylstilbestrol During Pregnancy Have Therapeutic Value?,” American Journal of Obstetrics and Gynecology 66, no. 5 (Nov. 1953): 1062–82.

serious question in 1971: See Langston, Toxic Bodies; see also Centers for Disease Control, “About DES,” www.cdc.gov/DES/CONSUMERS/about (accessed July 30, 2014).

fatal vaginal cancer: The first report of this cancer cluster’s tie to DES was Arthur L. Herbst, Howard Ulfelder, and David C. Poskanzer, “Adenocarcinoma of the Vagina: Association of Maternal Stilbestrol Therapy with Tumor Appearance in Young Women,” New England Journal of Medicine 284, no. 15 (Apr. 15, 1971): 878–81.

Penny Stone: See DES Action, “Meet the Woman Who Was the First to Connect DES and Cancer,” DES Action Voice, no. 134 (Fall 2012): 8.

reproductive cancers: For a good overview of the harms caused by prenatal DES, see National Cancer Institute, “Diethylstilbestrol (DES) and Cancer,” www.cancer.gov/cancertopics/factsheet/Risk/DES (accessed July 30, 2014).

Frances Oldham Kelsey: See Gardiner Harris, “The Public’s Quiet Savior from Harmful Medicines,” The New York Times, Sept. 13, 2010, http://www.nytimes.com/2010/09/14/health/14kelsey.html.

ten thousand children in Europe: Centers for Disease Control and Prevention, “Thalidomide,” http://www.cdc.gov/healthcommunication/toolstemplates/entertainmented/tips/thalidomide.html.

David Sandberg: David Sandberg reviewed this account of our discussions and confirmed its accuracy, personal communication, Oct. 13, 2012.

sixty to a hundred times: Walter L. Miller, “Prenatal Treatment of Classic CAH with Dexamethasone: Con,” Endocrine News (Apr. 2008): 16–18.

All we had were reports: The problems with this approach are alluded to in Fernández-Balsells et al., “Prenatal Dexamethasone.”

data coming out of Sweden: See Hirvikoski et al., “Cognitive Functions.”

missing or choosing not to participate: In 2010, New’s chief collaborator, Heino Meyer-Bahlburg, admitted that “fewer than 50% of mothers and offspring have responded to questionnaires”: in Phyllis W. Speiser et al., “A Summary of the Endocrine Society Clinical Practice Guidelines on Congenital Adrenal Hyperplasia due to Steroid 21-Hydroxylase Deficiency,” International Journal of Pediatric Endocrinology, May 2010, www.ijpeonline.com/content/2010/1/494173; for quotation, see “3. Prenatal Treatment of CAH.”

“fetal programming”: The risk of fetal programming from prenatal dexamethasone was raised as early as 1997; see Jonathan R. Seckl and Walter L. Miller, “How Safe Is Long-Term Prenatal Glucocorticoid Treatment?,” Journal of the American Medical Association 277, no. 13 (Apr. 2, 1997): 1077–79. For others raising the concern, see Hirvikoski et al., “Cognitive Functions.” For more recent analyses of prenatal glucocorticoids and the programming of adult disease, see Anjanette Harris and Jonathan Seckl, “Glucocorticoids, Prenatal Stress, and the Programming of Disease,” Hormones and Behavior 59, no. 3 (Mar. 2011): 279–89.

Wall Street Journal: Bernard Wysocki Jr., “As Universities Get Billions in Grants, Some See Abuses: Cornell Doctor Blows Whistle over Use of Federal Funds, Alleging Phantom Studies,” Wall Street Journal (Aug. 16, 2005): A1.

Sarafoglou went to the Feds: Ibid.

only about 80 percent of the time: The authors of the formal pediatric endocrine consensus that emerged in 2010 (discussed in the next chapter) noted the poor quality of efficacy data and concluded only that “the groups advocating and performing prenatal treatment appear to agree that it is effective in reducing and often eliminating virilization of female fetal genitalia and that the success rate is about 80–85%”; see Phyllis W. Speiser et al., “Congenital Adrenal Hyperplasia due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline,” Journal of Clinical Endocrinology and Metabolism 95, no. 9 (Sept. 2010): 4133–60.

had been warning: Seckl and Miller, “How Safe.”

Miller had finally declared: Miller, “Prenatal Treatment,” 17.

numerous medical societies: See, for example, Joint LWPES/ESPE CAH Working Group, “Consensus Statement on 21-Hydroxylase Deficiency from the Lawson Wilkins Pediatric Endocrine Society and the European Society for Pædiatric Endocrinology,” Journal of Clinical Endocrinology and Metabolism 87, no. 9 (Sept. 2002): 4048–53.

American Academy of Pediatrics: Jaime Frias, Lenore S. Levine, Sharon E. Oberfield, et al., “In Reply,” (letter to the editor) Pediatrics, vol. 107, no. 4 (2001): 805. The letter referred to “the memory of the tragedies associated with prenatal use of dexamethasone and thalidomide,” a line the authors later corrected to read “use of DES (diethylstilbestrol) and thalidomide”; see erratum, Pediatrics 107, no. 6 (June 2001): 1450, http://pediatrics.aappublications.org/content/107/6/1450.full.

I wrote to her: Alice Dreger to Maria New, e-mail communication, Dec. 8, 2009.

Miami: Maria I. New, “Long Range Outcome of Prenatal Treatment,” conference presentation at 2nd World Conference, Hormonal and Genetic Basis of Sexual Differentiation Disorders and Hot Topics in Endocrinology, Jan. 15, 2010, Miami Beach.

was very poor: This was confirmed in Meyer-Bahlburg’s report in Speiser et al., “A Summary of the Endocrine Society Clinical Practice Guidelines.”

at least one boy exposed: The Swedish team formally published the evidence suggesting that boys exposed prenatally might be hypomasculinized in 2011 and 2012. See Lajic, Nordenström, and Hirvikoski, “Long-Term Outcome”; see also Tatya Hirvikoski et al., “Prenatal Dexamethasone Treatment of Children at Risk for Congenital Adrenal Hyperplasia: The Swedish Experience and Standpoint,” Journal of Clinical Endocrinology and Metabolism 97, no. 6 (June 2012): 1881–83, doi:10.1210/jc.2012-1222.

plugging prenatal dex: See, for example, Maria I. New and Nathalie Josso, “Disorders of Sexual Differentiation,” in Lee Goldman and J. Claude Bennett, eds., Cecil Textbook of Medicine, 21st ed. (Philadelphia: W. B. Saunders, 2000): 1297–1306; Maria I. New, Lucia Ghizzoni, and Karen Lin-Su, “An Update of Congenital Adrenal Hyperplasia,” in Fima Lifshitz, ed., Pediatric Endocrinology, 5th ed. (New York: Informa Healthcare, 2007): 227–45.

Marsha Rappley: Conversation with Marsha Rappley; account confirmed by e-mail, Oct. 26, 2012.

another e-mail message: Alice Dreger to Maria New, e-mail communication, Jan. 24, 2010.

from Jeffrey Silverstein: Jeffrey H. Silverstein to Alice Dreger, e-mail communication, Jan. 26, 2010.

I asked Dr. Silverstein to clarify: Alice Dreger to Jeffrey H. Silverstein, e-mail communication, Jan. 26, 2010.

CHAPTER 8: DOCTOR, MY EYES

American medical ethics regulations: See the Code of Federal Regulations, Title 45, Part 46; for a sociological and historical analysis of institutional review boards (local ethics committees) in the United States, see Laura Stark, Behind Closed Doors: IRBs and the Making of Ethical Research (Chicago: University of Chicago Press, 2011).

New consistently described: For examples, see “Prenatal Diagnosis and Treatment of Congenital Adrenal Hyperplasia,” Maria New Children’s Hormone Foundation, www.newchf.org/testing.php (accessed July 30, 2014). See also Elizabeth Kitzinger, “Prenatal Diagnosis & Treatment for Classical CAH,” CARES Foundation Newsletter 2, no. 1 (Winter 2003): 15, www.caresfoundation.org/productcart/pc/news_letter/winter02-03_page_9.htm. See also Maria I. New, lecture presented at conference for CARES Foundation, Weill Medical College of Cornell University, New York, Nov. 14, 2001.

“to establish that prenatal treatment with dexamethasone is safe”: The same year New was describing dex as “safe” at the CARES Foundation meeting (ibid.), she told the NIH in her “Application for Continuation Grant,” “We must now establish that prenatal treatment with dexamethasone is safe and has no long-term consequences”; Maria I. New, application for continuation grant, “Androgen Metabolism in Childhood,” grant 5-R37-HD00072-37 (approved), National Institute of Child Health and Human Development (New York: Weill Cornell Medical College, 2001), quotation on p. 46. She specifically listed “prenatal treatment” as part of her “research plan” (p. 43). In the same grant application, New also told NIH: “This study is conducted . . . by FDA permission” (p. 47); I show below that there is no evidence she had such permission. As noted below, as late as 2006 she was still specifically naming dex-exposed fetuses as subjects of research for NIH grant purposes.

“human subjects of research”: In her 2001 “Application for Continuation Grant” (ibid.), New described the sources of her human subjects this way: “Sources of human subjects are referrals from local and distant physicians who care for pregnant women at risk for having a fetus with CAH” (p. 47). Naming “the strengths of our group,” New told the NIH, “We are the only group in the United States carrying out prenatal diagnosis and treatment of CAH and have thus accumulated a large population of prenatally treated patients to study” (p. 34).

resources to weather criticism: A classic example is that of Chester M. Southam who attempted infecting patients at the Jewish Chronic Disease Hospital with cancer, and who went on to be promoted within his field. See Chapter 17, “Illegal, Immoral, and Deplorable,” in Rebecca Skloot, The Immortal Life of Henrietta Lacks (New York: Crown Publishers, 2010).

code meant for Nazis: See Susan M. Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel Hill: University of North Carolina Press, 2009), pp. 189, 193.

“letter of concern”: Ellen K. Feder, Alice Dreger, Hilde Lindemann, et al., to the FDA Office of Pediatric Therapeutics, the Office for Human Research Protections, Mount Sinai Medical Center, Weill Medical School of Cornell University, and Florida International University, February 3, 2010, known as “Letter of Concern from Bioethicists,” reproduced at http://fetaldex.org/letter_bioethics.html.

“we agree with Dr. Miller”: The quote from Miller appeared in Walter L. Miller, “Prenatal Treatment of Classic CAH with Dexamethasone: Con,” Endocrine News, Apr. 2008, 16–18.

OHRP and the FDA had let us know: The OHRP response came from Kristina C. Borror to Ellen K. Feder and Anne Tamar-Mattis, Feb. 26, 2010. The FDA response came from Dianne Murphy to Ellen K. Feder, Feb. 8, 2010.

group of Boston clinicians: David A. Diamond et al., “Not Fetal Cosmetology,” Bioethics Forum, Mar. 8, 2010, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4528&blogid=140.

in the response: Alice Dreger, Ellen Feder, and Hilde Lindemann, “Prenatal Dex: Update and Omnibus Reply,” Bioethics Forum, Mar. 18, 2010, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4569&blogid=140.

“when the risks are non-trivial”: Walter L. Miller to Alice Dreger, quoted with permission; also quoted on p. 284 of Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine,” Journal of Bioethical Inquiry 9 (2012): 277–94.

bioethics e-mail discussion list: This exchange occurred on the Medical College of Wisconsin bioethics Listserv (mcw-bioethics@mailman.mcw.edu) starting in late Jan. 2010.

report on 532 pregnancies: See Maria I. New et al., “Extensive Personal Experience: Prenatal Diagnosis for Congenital Adrenal Hyperplasia in 532 Pregnancies,” Journal of Clinical Endocrinology & Metabolism 86, no. 2 (2001): 5651–57. An earlier paper from New and her team reporting on 239 pregnancies made no mention of any IRB approval or oversight; see Arlene B. Mercado et al., “Extensive Personal Experience: Prenatal Treatment and Diagnosis of Congenital Adrenal Hyperplasia Owing to Steroid 21-Hydroxylase Deficiency,” Journal of Clinical Endocrinology and Metabolism 80, no. 7 (July 1995): 2014–20.

“preserve life or intellectual capacity”: Phyllis W. Speiser et al., “Congenital Adrenal Hyperplasia Due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline,” draft dated Aug. 31, 2009, 80 pp.; quotations at 13, 19. A different version (with the same conclusion) was eventually published as Phyllis W. Speiser et al., “Congenital Adrenal Hyperplasia due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline,” Journal of Clinical Endocrinology and Metabolism 95, no. 9 (Sept. 2010): 4133–60. All of the lines quoted here remained the same from draft to final publication except for deletion of the line “the condition being treated, while fraught with emotional complexities, is directed toward a cosmetic outcome rather than aiming to preserve life or intellectual capacity.” The line was replaced with: “Prenatal treatment of CAH is directed toward reducing the need for surgery, rather than toward preserving life or intellectual capacity.”

“yield precise findings”: Speiser et al., “Congenital Adrenal Hyperplasia,” draft, 13.

the cosponsors: They were the American Academy of Pediatrics, Androgen Excess and PCOS Society, CARES Foundation, European Society for Endocrinology, European Society for Paediatric Endocrinology, Lawson Wilkins Pediatric Endocrine Society, and the Society of Pediatric Urology.

a formal call for responses: The target article abstract with a call for applications to respond was released by the American Journal of Bioethics on May 14, 2010. The AJOB target article was eventually published with responses (and with an amended title) as Laurence B. McCullough et al., “A Case Study in Unethical Transgressive Bioethics: ‘Letter of Concern from Bioethicists’ About the Prenatal Administration of Dexamethasone,” American Journal of Bioethics 10, no. 9 (Sept. 2010): 35–45.

that 2002 position paper: See Joint LWPES/ESPE CAH Working Group, “Consensus Statement on 21-Hydroxylase Deficiency from the Lawson Wilkins Pediatric Endocrine Society and the European Society for Pædiatric Endocrinology,” Journal of Clinical Endocrinology and Metabolism 87, no. 9 (Sept. 2002): 4048–53, at 4048.

over six hundred women: See “Prenatal Diagnosis and Treatment,” Maria New Children’s Hormone Foundation; and Kitzinger, “Prenatal Diagnosis & Treatment for Classical CAH.”

“everybody else in the world put together”: See New, presentation of Nov. 14, 2001.

lack of transparency: See my collaborator Hilde Lindemann’s June 2011 resignation letter from AJOB’s editorial board at Brian Leiter’s blog, http://leiterreports.typepad.com/blog/2011/06/editorial-misconduct-at-another-philosophy-journal-the-case-of-the-american-journal-of-bioethics.html. Glenn McGee responded to Lindemann in the comments.

“An Unethical Ethicist?”: Brendan Borrell, “An Unethical Ethicist?,” Scientific American, June 16, 2008, www.scientificamerican.com/article.cfm?id=glenn-mcgee. See also Brendan Borrell, “Alden March Bioethics Institute Picks Up the Pieces After Glenn McGee’s Ouster,” Scientific American, July 7, 2008, www.scientificamerican.com/article.cfm?id=bioethics-institute-picks.

I wrote to McCullough: This exchange occurred via e-mail on May 17 and 18, 2010. In an e-mail to me, copied to his coauthors and McGee, McCullough stated, “None of the authors of the paper: has any economic, professional, or any other kind of conflict of interest with regard to the content of our paper; has collaborated with Dr. New in her research, been funded on her grants, or served in any advisory capacity to her in her research; has ever published a paper with Dr. New; has ever written a prescription for a pregnant patient in one of Dr. New’s trials; has ever ‘acted as an ethics advisor to those administering, promoting, or researching this use of prenatal dex.’” As shown below, this was not true for McCullough and Chervenak.

Journal of Urology, in 2007: Jennifer Yang, Diane Felsen, and Dix P. Poppas, “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability,” Journal of Urology 178, no. 4, pt. 2 (Oct. 2007): 1598–1601.

“Bad Vibrations”: Alice Dreger and Ellen K. Feder, “Bad Vibrations,” Bioethics Forum, Hastings Center, June 16, 2010, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730.

Anne prepared legal letters: See Anne Tamar-Mattis to Jerry Menikoff, Director, Office for Human Research Protections, June 25, 2010, http://aiclegal.files.wordpress.com/2010/06/poppas-ohrp-letter.pdf.

Dan Savage pushed it hard for us: Dan Savage, “Female Genital Mutilation at Cornell University,” SLOG, June 16, 2010, http://www.thestranger.com/slog/archives/2010/06/16/female-genital-mutilation-at-cornell-university&view=comments.

Time article: Catherine Elton, “A Prenatal Treatment Raises Questions of Medical Ethics,” Time, June 18, 2010, http://content.time.com/time/health/article/0,8599,1996453,00.html (accessed July 30, 2014).

“if I wanted the treatment or not”: Ibid.

Endo Daily: Anonymous, “Draft CAH Guideline Revealed Monday,” Endo Daily, June 19–22, 2010, 8, www.nxtbook.com/tristar/endo/day4_2010/index.php?startid=8.

“This is not standard of care”: Ibid. For the final version of the consensus document, see Speiser et al., “Congenital Adrenal Hyperplasia . . . Clinical Practice Guideline.”

Meyer-Bahlburg: Heino F. L. Meyer-Bahlburg, “What Causes Low Rates of Child-Bearing in Congenital Adrenal Hyperplasia?” Journal of Clinical Endocrinology and Metabolism 84, no. 6 (June 1999): 1844–47; quotation at 1845–46.

“androgens on brain and behavior”: Ibid., quotation at 1846.

Annals of the New York Academy: Saroj Nimkarn and Maria I. New, “Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency: A Paradigm for Prenatal Diagnosis and Treatment,” Annals of the New York Academy of Sciences, no. 1192 (Apr. 2010): 5–11, quotation at 9.

“well-documented behavioral masculinization”: Ibid, 9.

“not a reasonable goal of clinical care”: Sandberg quoted in Elton, “Prenatal Treatment.”

rates of tomboyism and lesbianism: Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Preventing Homosexuality (and Uppity Women) in the Womb?” Bioethics Forum, Hastings Center, June 29, 2010, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4754&blogid=140. We later expanded on this in Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

Dan Savage again helped us out: Dan Savage, “Doctor Treating Pregnant Women with Experimental Drug to Prevent Lesbianism,” SLOG, June 30, 2010, http://www.thestranger.com/slog/archives/2010/06/29/doctor-treating-pregnant-women-with-experimental-drug-to-prevent-lesbianism.

“the anti-lesbian drug”: See, for example, Sharon Begley, “The Anti-Lesbian Drug,” Newsweek, July 2, 2010, www.newsweek.com/anti-lesbian-drug-74729 (accessed July 31, 2014).

the OHRP and the FDA indicated: Kristina C. Borror for OHRP to Ellen K. Feder and Alice Dreger, Sept. 2, 2010, reproduced at http://fetaldex.org/correspondence_files/OHRP_response_Sept_2_2010.pdf; Robert M. Nelson of FDA “through” Dianne Murphy of FDA to Kristina C. Borror for OHPR, Aug. 30, 2010, reproduced at http://fetaldex.org/correspondence_files/FDA_to_OHRP_Aug_30_2010.pdf.

FDA investigator revealed: Ibid.

podcast with Larry McCullough: Glenn McGee with Laurence McCullough, “A Case Study in Unethical Transgressive Bioethics,” Bioethics Channel, Center for Practical Bioethics, Sept. 7, 2010, http://www.fluctu8.com/podcast-episode/a-case-study-in-unethical-transgressive-bioethics-84701-69055.html.

Meyer-Bahlburg announced the Feds’ nonfindings: Heino F. L. Mayer-Bahlburg to SEXNET, Sexnet@Listserv.It.Northwestern.Edu, Sept. 3, 2010, “DSD Matter.”

CHAPTER 9: DOOMED TO REPEAT?

a hard time on thalidomide: See Nancy Langston, Toxic Bodies: Hormone Disruptors and the Legacy of DES (New Haven: Yale University Press, 2010).

New York Review of Books: Elizabeth Allen et al., “Against ‘Sociobiology,’” New York Review of Books, Nov. 13, 1975, http://www.nybooks.com/articles/archives/1975/nov/13/against-sociobiology.

“from these monstrous crimes”: Quoted in Ullica Segerstrale, Defenders of the Truth: The Sociobiology Debate (Oxford, UK: Oxford University Press, 2000), 181.

talking to Wilson: Alice Dreger, telephone interview with Edward O. Wilson, Aug. 24, 2009.

Elizabeth Loftus: Elizabeth Loftus reviewed and agreed with this account of our conversation on February 13, 2012.

real name is Nicole Taus: See Carol Tavris, “Whatever Happened to ‘Jane Doe’?” Skeptical Inquirer 32, no. 1 (Jan.–Feb. 2008), www.csicop.org/si/show/whatever_happened_to_jane_doe.

saying her privacy was being violated: See Carol Tavris, “The High Cost of Skepticism,” Skeptical Inquirer 26, no. 4 (July–Aug. 2002): 41–44, http://www.csicop.org/si/show/high_cost_of_skepticism/.

the two went on to publish: Elizabeth F. Loftus and Melvin J. Guyer, “Who Abused Jane Doe? The Hazards of the Single Case History: Part I,” Skeptical Inquirer 26, no. 3 (May–June 2002): 24–32, http://faculty.washington.edu/eloftus/Articles/JaneDoe.htm.

In the end, they prevailed: See Tavris, “Whatever Happened to ‘Jane Doe’?”

I hired a lawyer and sued: Alice Dreger v. U.S. Department of Health & Human Services, Food & Drug Administration, and Office for Human Research Protections, United States District Court, Western District of Michigan, Southern Division, filed Oct. 3, 2011, 1:2011-cv-01059.

ethics canary in the modern medical mine: Hence the subtitle I gave our paper on the matter: Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine,” Journal of Bioethical Inquiry 9 (2012): 277–94.

Cornell clinic in 1986: This date comes from a faxed letter from Maria I. New to Jeff Cohen of Cornell’s medical school dated August 19, 2004, obtained via FOIA, and is confirmed in Arlene B. Mercado et al., “Extensive Personal Experience: Prenatal Treatment and Diagnosis of Congenital Adrenal Hyperplasia Owing to Steroid 21-Hydroxylase Deficiency,” Journal of Clinical Endocrinology and Metabolism 80, no. 7 (July 1995): 2014–20.

drug trials were not rigorous: See the critical analysis of New’s studies in Mercè M. Fernández-Balsells et al., “Prenatal Dexamethasone Use for the Prevention of Virilization in Pregnancies at Risk for Classical Congenital Adrenal Hyperplasia Because of 21-Hydroxylase (CYP21A2) Deficiency: A Systematic Review and Meta-Analyses,” Clinical Endocrinology 73, no. 4 (2010): 436–44.

some results: Mercado et al., “Extensive Personal Experience.”

New’s first Cornell IRB application: Maria I. New, IRB application (approved) for project entitled “Steroid 21-Hydroxylase Deficiency: Inborn error of steroid synthesis” (New York: New York Hospital-Cornell Medical Center Institutional Review Board: 1985), obtained via FOIA.

sixteen years: New noted that she was now checking the boxes in a letter to Owen Davis, Chair of the Cornell IRB, on March 21, 2001, subject “Annual Review Report for Protocol #0296-223CRC” (obtained via FOIA). That said, a year later, there is an IRB application from New for prenatal dex marked “received Mar 15 2002” on which she again did not check the boxes for “pregnant women” or “fetuses”; see Maria I. New, “Request for Approval of Investigation Involving Use of Human Subjects,” Protocol 0296-223 (obtained via FOIA). Similarly, in 2003, the Cornell IRB approved a minor revision of New’s IRB protocol to “clarify” that “The correct age criteria should read, ‘Newborn to 100 years’” without apparently noticing that it should really have read “fetuses to 100 years.” The request was from Maria I. New to David Behrman, Chair of the Cornell IRB, March 4, 2003, subject “Protocol #0296-223”; approval returned April 21, 2003 from Behrman to New (obtained via FOIA).

1985 consent form: This formed part of the 1985 IRB application noted below. We also discuss this in Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

“transient and reversible suppression”: Ibid., p. 9e.

updated information: For example, New’s consent forms did not incorporate notice of the potential harms in terms of temperament and behavior as reported by New’s own group in P. D. Trautman et al., “Effects of Early Prenatal Dexamethasone on the Cognitive and Behavioral Development of Young Children: Results of a Pilot Study,” Psychoneuroendocrinology 20, no. 4 (1995): 439–49, nor of the potential somatic effects (including failure to thrive and delayed psychomotor development) reported in Svetlana Lajic et al., “Long-Term Somatic Follow-up of Prenatally Treated Children with Congenital Adrenal Hyperplasia,” Journal of Clinical Endocrinology & Metabolism 83, no. 11 (1998): 3872–80. Maternal “side” effects are also downplayed on New’s consent forms in spite of reports in the literature of “significant maternal side effects” including “Cushingoid facial features, severe striae resulting in permanent scarring, and hyperglycemic response” in addition to “hypertension, gastrointestinal intolerance, or extreme irritability”; see S. Pang, A. T. Clark, L. C. Freeman, et al., “Maternal Side Effects of Prenatal Dexamethasone Therapy for Fetal Congenital Adrenal Hyperplasia,” Journal of Clinical Endocrinology & Metabolism, vol. 75, no. 1 (1992): 249–53.

As late as 2004, Cornell’s IRB: Maria I. New, Consent form for clinical investigation (IRB approved) for project entitled “Hypo- and hyperadrenalstates/prenatal diagnosis and therapy” (New York: New York Presbyterian Hospital-Weill Medical College of Cornell University: 2004), obtained via FOIA.

than any other researcher: See, e.g., p. 2 of New’s 1996 grant application, Maria I. New, “Androgen metabolism in childhood,” grant application R01 HD00072-33A1 (approved), National Institutes of Health (New York: Cornell University Medical College, 1996); see also p. 34 of her 2001 application for continuation grant, Maria I. New, application for continuation grant, “Androgen Metabolism in Childhood,” grant 5-R37-HD00072-37 (approved), National Institute of Child Health and Human Development (New York: Weill Cornell Medical College, 2001).

2001 grant renewal application: See New, 2001 “Application for Continuation Grant,” 34; emphasis added.

2,144: See New, 2001 “Application for Continuation Grant,” 42.

By 1996, the NIH was specifically: New’s 1996 NIH application reported that “genital abnormalities and often multiple corrective surgeries needed affect social interaction, self image, romantic and sexual life, and fertility. As a consequence, many of these patients, and the majority of women with the salt-losing variant [of CAH], appear to remain childless and single. Preventative prenatal exposure is expected to improve this situation”; see p. 38 of Maria I. New, “Androgen metabolism in childhood,” grant application R01 HD00072-33 (approved), National Institutes of Health (New York: Cornell University Medical College, 1996). In a related application packet, New specifically promised to try to determine “the success of DEX in suppressing behavioral masculinization”; see p. 17 of Maria I. New, “Androgen metabolism in childhood,” grant application R01 HD00072-33A1 (approved), National Institutes of Health (New York: Cornell University Medical College, 1996). In her 2001 “Application for Continuation Grant,” New reiterated the same interest in prenatal dex: “Our studies of the outcome in CAH patients with respect to gender, cognition, and social function will provide vital information on the validity of our [prenatal] treatment protocol”; quotation at 44.

Kyriakie Sarafoglou was hired: Anonymous, “Medical College Pays $4.4 Mil Settlement,” The Cornell Daily Sun, Sept. 15, 2005, http://cornellsun.com/blog/2005/09/19/medical-college-pays-44-mil-settlement/. She was hired into this position in August of 2001 according to the report of an investigation conducted by Adam Asch of Cornell at the request of David Hajjar, Dean at Cornell’s medical school, on November 4, 2002 (obtained by FOIA).

financial and ethical irregularities: See Bernard Wysocki Jr., “As Universities Get Billions in Grants, Some See Abuses: Cornell Doctor Blows Whistle over Use of Federal Funds, Alleging Phantom Studies,” Wall Street Journal, Aug. 16, 2005): A1.

concerning irregularities: in a memo with the subject line “Protocol # ????-???,” Sarafoglou noted to Cornell administrator Valerie Johnson that two of New’s protocols appeared to be exact duplicates, “each requesting $172,025” in terms of budget.” She asked, “How is this possible if they are separate studies?” and asked if the “same [100] patients will now undergo the same tests as they did” in another protocol; “Does this make sense?” New responded to Johnson in a letter dated December 5, 2002, that “I do not understand why the reviewers need to continually compare two protocols. Further, there’s no contraindication by the NIH to overlapping protocols.” (Obtained via FOIA.)

internal Cornell report: See Asch to Hajjar, November 4, 2002. According to this report, Sarafoglou put her concerns to Gerald Loughlin, Chair of Pediatrics, on September 10, 2002.

anguished message: Kyriakie Sarafoglou to Kristina Borror of OHRP, December 28, 2003 (obtained via FOIA).

“informed consent could be found”: Review of Neil H. White for OHRP, May 20, 2004 (obtained via FOIA).

“children as subjects of research”: Review of Bruce Gordon for OHRP, May 21, 2004 (obtained via FOIA).

angry memo: This was obtained via FOIA and has a subject line referring to New’s main CAH IRB protocol at Cornell (#0296-223). This memo is further discussed below.

New reporting to her IRB: Two examples located via FOIA: (1) Reviewer “Dr. Aledo” reporting on a meeting with Maria New on April 9, 2001, about her umbrella CAH IRB protocol: “112 accruals[,] 0 refusals[,] withdrawals[,] complaints.” Aledo recommended approval for another year. (2) Reviewer “Dr. Aledo” reporting on a meeting with Maria New on April 8, 2002, about the same protocol: “35 accruals[,] 0 withdrawals[,] refusals[,] complaints.” Aledo recommended approval for another year. See also the 1997 letter cited next.

in a letter to her IRB: Maria I. New to Dorothy Hilpmann, IRB Chair, April 4, 1997, subject “Annual Renewal Report for Protocol #0296-223CRC.” (Obtained via FOIA.)

a publication she had co-authored: the publication cited in the letter was Mercado et al., “Extensive Personal Experience.”

undertook a massive review: For a discussion of this earlier OHRP investigation, see Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone,” pp. 289–90.

extraordinary step of requiring review: See Patrick J. McNeilly for OHRP to Antonio M. Grotto and Jeffrey M. Cohen of Weill College of Medicine of Cornell University, July 21, 2004, subject “Human research subject protections under Multiple Project Assurance (MPA) M-1185 and Federalwide Assurance (FWA) 93.” (Obtained via FOIA.)

letter dated May 24, 2004: Patrick J. McNeilly for OHRP to Antonio M. Gotto, and Jeffrey M. Cohen of Weill College of Medicine of Cornell University, May 24, 2004; quotation on p. 7, item 15 (obtained via FOIA).

a lot of back-and-forth: See Jeffrey M. Cohen, Weill Medical College of Cornell, to Patrick J. McNeilly, OHRP, June 29 and August 31 2004. (Obtained via FOIA.)

New wrote back a curt memo: Maria I. New to Jeff Cohen of Cornell, fax transmission dated August 9, 2014. (Obtained via FOIA.)

in practice: Indeed, one interesting line in her grant renewal from 2001 seems to confirm this approach of treating the pregnant women as patients at Cornell while naming them as research subjects to NIH: “Sources of human subjects are referrals from local and distant physicians who care for pregnant women at risk for having a fetus with CAH.” But a few lines later, New adds: “Prenatal diagnosis and treatment are performed for clinical indications and are not primarily research purposes.” See 2001 “Application for Continuation Grant,” 47. See also the discussion of the fetuses treated at Mount Sinai, below.

OHRP would later tell us: Kristina C. Borror for OHRP to Ellen K. Feder and Alice Dreger, Sept. 2, 2010, reproduced at http://fetaldex.org/correspondence_files/OHRP_response_Sept_2_2010.pdf.

Cornell’s word to OHRP: Mary Simmerling for Cornell to Kristina Borror for OHRP, July 29, 2010. (Obtained via FOIA.)

until Sarafoglou’s complaints: The first audit I can find occurred in late 2002 as a response to Sarafoglou’s complaints; see Asch to Hajjar, November 4, 2002. It only included 50 patient charts and the method of chart selection is unclear.

angry whistleblowing memo: As noted above, this was obtained via FOIA and has a subject line specifically referring to New’s main CAH IRB protocol at Cornell (#0296-223).

consistently led the NIH to believe: All of Maria New’s NIH grant materials from 1996 forward that I have obtained include discussions of prenatal dexamethasone treatments as part of her experimental research. Even when she discussed retrospective follow-up studies, she also specifically discussed new pregnancy exposures as part of her ongoing research plan. See below for a discussion of how this did not change when she moved to Mount Sinai.

in 2006, in a research progress report: Maria I. New, “Androgen metabolism in childhood,” grant progress report 5-R37-HD00072-42 to Department of Health and Human Services, Public Health Services (New York: Mount Sinai School of Medicine: 2006), quotation on p. 3. (Obtained via FOIA.)

letter from the head of Mount Sinai’s IRB: Jeffrey H. Silverstein, IRB Chair of Mount Sinai School of Medicine, to NIH, subject “GCO Project #04-0469 0001 01 PE,” September 2, 2004 (obtained via FOIA). It is unlikely that the 2004 project called “prenatal diagnosis and treatment” was a retrospective study of the sort that Silverstein said in 2010 had IRB approval, because in his letter to the OHRP in 2010, Silverstein said that the title of the retrospective study was “Long Term Outcome in Offspring and Mothers of Dexamethasone-Treated Pregnancies at Risk for Classical Adrenal Hyperplasia Owing to 21-Hydroxylase Deficiency”; see Jeffrey H. Silverstein for Mount Sinai School of Medicine to Kristina C. Borror of OHRP, August 2, 2010 (obtained via FOIA). New’s IRB applications at Cornell consistently distinguished between the prenatal interventions and the retrospective studies.

same administrator who told the OHRP: Silverstein to Borror, August 2, 2010.

Mount Sinai administrator told OHRP: Ibid., 8.

New had written to the NIH: Maria I. New to Duane Alexander, dated February 12, 2003, “Re: 4-R37HD00072-38.” (Obtained via FOIA.)

writing her a big check: NIH Staff, administrative increase/administrative supplement, staff recommendation “re. Maria I. New,” signed April 3, 4, and 7, 2003. (Obtained via FOIA.) In an email exchange on April 1, 2003, Barbara L. Pifel of Cornell told Angelos Bacas of NIH grant management that September 1, 2002 was “when Dr. New stopped receiving salary.” (Obtained via FOIA.)

perpetual motion machine: Aron C. Sousa, “The Dex Diaries, Part 4: A Perpetual Motion Machine of NIH Funding?” Aug. 21, 2012, http://fetaldex.org/diary04.html.

“which are part of the research”: Remark by “Dr. Aledo,” minutes of the Committee on Human Rights in Research of Cornell University Weill Medical College, September 29, 2003. (Obtained via FOIA.)

McCullough told OHRP: Laurence B. McCullough to Kristina C. Borror of OHRP, April 23, 2010. (Obtained via FOIA.)

at the medical schools of Cornell and Mount Sinai: See Alice Dreger and Ellen K. Feder, “FDA Ethicist’s Undisclosed Conflicts of Interest in Prenatal Dex Case,” Apr. 17, 2014, http://impactethics.ca/2014/04/17/.fda-ethicists-undisclosed-conflicts-of-interest-in-prenatal-dex-case.

served as “key personnel”: Frank A. Chervenak to Maria I. New, Apr. 15, 2003, regarding Rare Diseases Clinical Research Network grant proposal RR-03-008, reproduced at http://www.fetaldex.org/AJOB_Chervenak.html. (Obtained via FOIA.)

Robert “Skip” Nelson: See Robert M. Nelson of FDA “through” Diane Murphy of FDA to Kristina Borror for OHPR, Aug. 30, 2010.

negotiating a new AJOB journal editorship in chief: See Dreger and Feder, “FDA Ethicist’s Undisclosed Conflicts.”

to hire an editorial assistant: Vince Tolino, FDA Director of Ethics and Integrity, advised Nelson in e-mail discussions about this new position that it would look “cleaner” if a university used the money to pay a grad student to be an editorial assistant to Nelson. This correspondence is reproduced at http://fetaldex.org/updates_files/FOIA%20Nelson%20FDA%20AJOB-PR%20position.pdf.

was keeping track: Robert “Skip” Nelson to Jerry Menikoff, Kristina C. Borror, and Michael A. Carome, e-mail communication, Sept. 1, 2010, subject line “FDA Memo to OHRP re Dex for CAH” (obtained via FOIA): “Let us know when it will be posted.”

Nelson had told everybody: See Nelson through Murphy to Borror.

the 1996 exemption letter: Solomon Sobel for the FDA to Maria I. New, Cornell Medical Center, February 7, 1996 (obtained via FOIA).

without full FDA review: In fact the 1996 letter (ibid.) notes, in boilerplate language, that an IND exemption can only be provided if “the route of administration, dosage level, patient population, and other factors do not significantly increase the risks,” which surely would not have been true when aiming the intervention at fetuses.

no recollection of the matter: e-mail exchange between Alice Dreger and Solomon Sobel of the FDA, July 19, 2010. The reason I contacted Sobel at this time was that New had told a journal editor with whom I was communicating that “Prenatal dexamethasone treatment has been FDA approved by Dr. Sobel,” and I was trying to understand what she meant. For details, see Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

shredded during an FDA move: Robert “Skip” Nelson to Jerry Menikoff, e-mail communication, June 14, 2010 (obtained via FOIA): “Thanks. I just learned that exemption letter documentation ([one inch of text redacted], certainly ones from 1996) were shredded for the move to White Oak [redacted].” See also Nelson’s e-mail to Diane Murphy at FDA, Sept. 25, 2010: “Other than the copy of the IND exemption letter that was sent by Cornell as part of their package in response to the OHRP inquiry, there are no known FDA records pertaining to the IND.” (Obtained via FOIA.)

suggesting that OHRP rely on his work: “And thanks again for coming up with the plan for using the FDA memo”; Jerry Menikoff replying to Robert “Skip” Nelson, e-mail communication, Sept. 1, 2010 (obtained via FOIA).

“ethically proper at every level”: Maria I. New, “Vindication of Prenatal Diagnosis and Treatment of Congenital Adrenal Hyperplasia with Low-Dose Dexamethasone,” American Journal of Bioethics 10, no. 12 (2010): 67–68.

the editors refused: The exchange is reproduced at http://fetaldex.org/AJOB_Sept_2012.html.

New is subject to no such limitation: This was explained to me in e-mail correspondence with Robert “Skip” Nelson, May 24, 2011. See also Nelson through Murphy to Borror, Aug, 30, 2010.

the “bad-ad” division of the FDA: Alice Dreger to FDA Division of Drug Marketing, Advertising, and Communications, Sept. 10, 2010.

They shut it down: This news first came to us via a conversation between Ellen Feder and Svetlana Lajic (a member of the Swedish team), in an e-mail from Lajic to Feder, Sept. 19, 2011, subject “Question about your study of dexamethasone”; quoted in Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone,” 285. The Swedes later published this information in Tatya Hirvikoski et al., “Prenatal Dexamethasone Treatment of Children at Risk for Congenital Adrenal Hyperplasia: The Swedish Experience and Standpoint,” Journal of Clinical Endocrinology and Metabolism 97, no. 6 (2012): 1881–83.

study of forty-three children: Ibid.

retrospective convenience-sample study: Heino F. L. Meyer-Bahlburg et al., “Cognitive Outcome of Offspring from DexamethasoneTtreated Pregnancies at Risk for Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency,” European Journal of Endocrinology 167 (2012): 103–10.

highly skewed: Analysis of this paper was provided in an epilogue to Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

“prevents understanding of questionnaire”: Maria I. New, “Long-Term Outcome in Offspring and Mothers of Dexamethasone-Treated Pregnancies at Risk for Classical Congenital Adrenal Hyperplasia Owing to 21-Hydroxylase Deficiency,” Rare Diseases Clinical Research Network, research protocol, (New York: Mount Sinai School of Medicine, 2007), 25 (obtained via FOIA).

Maria New still does: See “Prenatal Diagnosis and Treatment of Congenital Adrenal Hyperplasia,” Maria New Children’s Hormone Foundation, www.newchf.org/testing.php (accessed Aug. 1, 2014).

The top hit: Dreger, Feder, and Tamar-Mattis, “Prenatal Dexamethasone.”

The second hit: Svetlana Lajic, “Prenatal Treatment of Congenital Adrenal Hyperplasia” (undated), at http://www.caresfoundation.org/productcart/pc/prenatal_treatment_cah.html.

The third: Alice Dreger, Anne Tamar-Mattis, and Ellen K. Feder, “Experimental Status of Prenatal Dexamethasone for CAH Re-Affirmed,” Endocrine Today, October, 2011, at http://www.healio.com/endocrinology/news/print/endocrine-today/%7B547e98a4-7f10-495a-a01e-c5719cea8071%7D/experimental-status-of-prenatal-dexamethasone-for-cah-re-affirmed.

The fourth: Catherine Elton, “A Prenatal Treatment Raises Questions of Medical Ethics,” Time, June 18, 2010.

The fifth: Tatya Hirvikoski et al., “Prenatal Dexamethasone Treatment of Children at Risk for Congenital Adrenal Hyperplasia: The Swedish Experience and Standpoint,” Journal of Clinical Endocrinology and Metabolism 97, no. 6 (June 2012): 1881–83, doi:10.1210/jc.2012-1222.

The sixth: Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis, “Preventing Homosexuality (and Uppity Women) in the Womb?” Bioethics Forum, Hastings Center, June 29, 2010, www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4754&blogid=140.

The seventh: Alice Dreger, “IVF on Steroids: The Dangerous Off-Label Use of ‘Dex’ During Pregnancy,” The Atlantic (January 13, 2013), at http://www.theatlantic.com/health/archive/2013/01/ivf-on-steroids-the-dangerous-off-label-use-of-dex-during-pregnancy/267187/.

CONCLUSION: TRUTH, JUSTICE, AND THE AMERICAN WAY

one tiny historical story: I am indebted to Charles Greifenstein of the American Philosophical Society for introducing me to this historical story.

EPILOGUE: POSTCARDS

Journal of Urology: Richard S. Hurwitz, “Long-Term Outcomes in Male Patients with Sex Development Disorders—How Are We Doing and How Can We Improve?,” Journal of Urology 184, no. 3 (2010): 821–32.

Swiss National Advisory: Swiss National Advisory Commission on Biomedical Ethics, NEK-CNE, On the Management of Differences of Sex Development: Ethical Issues Related to “Intersexuality” (Berne: Nov. 2012), Opinion No. 20/2012, http://www.nek-cne.ch/fileadmin/nek-cne-dateien/Themen/Stellungnahmen/en/NEK_Intersexualitaet_En.pdf.

special rapporteur on torture: Juan E. Méndez, Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Human Rights Council of the United Nations, Feb. 1, 2013, www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf.

a recent study: Jürg C. Streuli et al., “Shaping Parents: Impact of Contrasting Professional Counseling on Parents’ Decision Making for Children with Disorders of Sex Development,” Journal of Sexual Medicine 10, no. 8 (Aug. 2013): 1953–60, doi: 10.1111/jsm.12214. See also Ellen K. Feder, Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine (Bloomington: Indiana University Press, 2014).

through the American courts: M.C., a minor by and through his parents Pamela Crawford and John Mark Crawford v. Dr. Ian Aaronson, Dr. James Amrhein, Dr. Yawappiagyei-Dankah, Kim Aydlette, Meredith Williams, etc., Civil Action No. 2:13-cv-01303-DCN (U.S. District Court for South Carolina, Charleston Division), filed May 14, 2013.

European clinicians again seem to be leading: Alice Dreger, “Gender Identity Disorder in Childhood: Inconclusive Advice to Parents,” Hastings Center Report 39, no. 1 (Jan.–Feb. 2009): 26–29.

“pink boys” and “blue girls”: See Alice Dreger, “Pink Boys: What’s the Best Way to Raise Children Who Might Have Gender Identity Issues?,” Pacific Standard (July 18, 2013), at http://www.psmag.com/culture/pink-boys-gender-identity-disorder-62782/.

among transgender activists: Zinnea Jones, “100-Plus Trans Women Stand Against Calpernia Addams and Andrea James: An Open Letter,” Huffington Post (April 14, 2014), www.huffingtonpost.com/zinnia-jones/calpernia-addams-andrea-james_b_5146415.html.

groundbreaking book: Anne A. Lawrence, Men Trapped in Men’s Bodies: Narratives of Autogynephilic Transsexualism (New York: Springer, 2013).

made safer and better: See, for example, Emily Newfield et al., “Female-to-Male Transgender Quality of Life,” Quality of Life Research 15, no. 9 (Nov. 2006): 1447–57; Mohammad Hassan Murad et al., “Hormonal Therapy and Sex Reassignment: A Systematic Review and Meta-Analysis of Quality of Life and Psychosocial Outcomes,” Clinical Endocrinology 72, no. 2 (Feb. 2010): 214–31; Tiffany A. Ainsworth and Jeffrey H. Spiegel, “Quality of Life of Individuals with and without Facial Feminization Surgery or Gender Reassignment Surgery,” Quality of Life Research 19, no. 7 (Sept. 2010): 1019–24; and Anne A. Lawrence, “Factors Associated with Satisfaction or Regret Following Male-to-Female Sex Reassignment Surgery,” Archives of Sexual Behavior 32, no. 4 (Aug. 2003): 299–315. See also Ray Blanchard, “The Case for Publicly Funded Transsexual Surgery,” Psychiatry Rounds 4, no. 2 (Apr. 2000), 4–6, http://individual.utoronto.ca/james_cantor/index_files/Blanchard2000.pdf.

Noble Savages: Napoleon Chagnon, Noble Savages: My Life Among Two Dangerous Tribes—the Yanomamö and the Anthropologists (New York: Simon & Schuster, 2013).

Washington Post: Sebastiao Salgado, “The Yanomami: An Isolated Yet Imperiled Amazon Tribe,” The Washington Post, July 25, 2014, at http://www.washingtonpost.com/wp-srv/special/world/yanomami/.

ended up resigning: David Cyranoski, “Controversial Bioethicist Quits Stem-Cell Company,” Nature blog, Mar. 1, 2012, www.nature.com/news/controversial-bioethicist-quits-stem-cell-company-1.10151, doi:10.1038/nature.2012.10151.

had mysteriously died: Jiyeon Lee, “South Korean Company Cleared in Deaths Following Stem Cell Therapy,” CNN, Dec. 14, 2010, www.cnn.com/2010/WORLD/asiapcf/12/14/south.korea.stem.cell.

investigation by the FDA: See the warning letter from FDA to Celltex Therapeutics Corporation, Sept. 24, 2012, www.fda.gov/ICECI/EnforcementActions/WarningLetters/2012/ucm323853.htm.

Summer herself resigned: See Christian Munthe, “Further on What’s Cookin’ at AJOB and Bioethics.net,” Philosophical Comment blog Sept. 16, 2012, http://philosophicalcomment.blogspot.com/2012/09/further-on-whats-cookin-at-ajob-and.html.

AJOB had essentially been forced to publish: William Heisel, “Ethics Journal Corrects Record, Reveals Conflicts of Interest,” Reporting on Health, Aug. 15, 2012, www.reportingonhealth.org/2012/08/14/ethics-journal-corrects-record-reveals-conflicts-interest.

One recent laboratory study: Marine Poulain et al., “Dexamethasone Induces Germ Cell Apoptosis in the Human Fetal Ovary,” Journal of Clinical Endocrinology & Metabolism 97, no. 10 (Oct. 2012): e1890–97.

study from Finland: Natasha Khalife et al., “Prenatal Glucocorticoid Treatment and Later Mental Health in Children and Adolescents,” PLOS One 8, no. 11 (Nov. 2013): e80194.

Theresa Defino: Theresa Defino, “Big Drop in OHRP Letters, Open Cases Raise Questions of Agency Commitment,” Report on Research Compliance 8, no. 3 (Mar. 2011): 1–3, www.reportonresearchcompliance.com/rrc0311_reprint.pdf; and Theresa Defino, “‘SUPPORT’ Backlash Prompts Meeting, Guidance as Debate Moves Beyond OHRP” and “HHS Asked Oversight Agency, NIH to ‘Align’ About Disputed Study,” Report on Research Compliance, vol. 10, no. 7 (July 2013): 1–6.

only one investigation: Theresa Defino, “With Just One Investigation in 2013, OHRP Seems ‘Invisible’ After SUPPORT Dust-Up,” Report on Research Compliance, May 2014, www.reportonresearchcompliance.com/rrc-reprint-0514.pdf.

Kari Christianson: quoted in Alice Dreger, “IVF on Steroids: The Dangerous Off-Label Use of ‘Dex’ During Pregnancy,” The Atlantic, Jan. 16, 2013, www.theatlantic.com/health/archive/2013/01/ivf-on-steroids-the-dangerous-off-label-use-of-dex-during-pregnancy/267187.

the Nazis: I will forever be grateful to Ellen Feder for our long discussions of Hannah Arendt during the years we lived together with dex.