Chapter 2

Lessons from the History of Bioethics

“Treat similar cases similarly; dissimilar cases dissimilarly.”

—Aristotle, Nichomachean Ethics

Current discussion of enhancement of humans suffers from a depressing mistake that has infected bioethics for a half-century: lumping too many different kinds of cases together. Cases of human enhancement differ dramatically, just as do kinds of technology. Gene therapy on future generations of children does not raise the same issues as those of giving Ritalin to existing children. We should not lump the ethical issues of smart phones under technology as if they resembled those of nuclear energy.

In the history of bioethics, this lesson has been hard to learn. Consider death and dying. In 1975, twenty-one-year-old Karen Quinlan mixed alcohol with barbiturates and tranquilizers, causing her to fall into a persistent vegetative state. After months of hoping that she would emerge from her coma, her parents decided to remove her respirator so that she could pass away. A lower-court judge disagreed and the Quinlans appealed to the New Jersey Supreme Court.

The court’s decision in 1976 granted her parents the right to remove the respirator, allegedly based on Karen’s personal liberty to live as she chose. Tragically, for the next decades of law and bioethics, courts referred to Karen as if she were a competent patient, which she was not.

This decision mistakenly lumped together the liberty-rights of competent patients with those of families of incompetent patients, and all those with another kind of right, the rights of now-incompetent-but-formerly-competent patients. As we now know, these cases profoundly differ from one another.

The right to privacy most obviously applies to us as competent patients and to our rights to determine our own medical destinies. Ideally, our courts would have first laid out that right and then tackled other issues, such as those affecting incompetent patients. But life didn’t give the court that choice, so the Quinlan court tackled incompetent patients first.

It took fifteen more years before the U. S. Supreme Court straightened things out in its 1990 Cruzan decision. Over those years, a dozen different state supreme courts issued a dozen different, often conflicting, decisions about rights of patients at the end of life. These courts sometimes erred in lumping competent patients with incompetent patients.

Like Karen Quinlan, Nancy Cruzan had been in a persistent vegetative state for many years. Unlike Karen, Nancy’s case involved removing a feeding tube, not a respirator. Cruzan laid down an important theme in American law about rights of dying patients, and did so by distinguishing two different kinds of cases. As simple as that sounds, that Court took a gigantic step. Merely keeping different kinds of cases separate would go a long way in bioethics, law, and public policy toward exposing self-promoting Alarmists and toward seeing the real issues clearly.

Unlike the Quinlan decision, Cruzan involved the standards of evidence that should be met by families wishing to remove feeding tubes or respirators from incompetent relatives. With regard to incompetent patients, Cruzan held that a state could, but need not, pass a statute requiring the clear and convincing standard of evidence about what a formerly competent patient would have wanted done.[1]

Critics of Joseph and Julia Quinlan made a mistake when they compared the Quinlans’ decision to remove Karen’s respirator with the Nazis’ secret killing of six million Jews. They grouped nonsensational cases with horrible ones, smearing all with the same paint.

Of great importance, Cruzan recognized a right of competent patients to refuse medical treatment, even if such refusal led directly to their deaths. For the first time, the Cruzan decision by the U.S. Supreme Court stated that the Constitution gave competent citizens unrestricted freedom to refuse medical support, even against wishes of physicians and even if such patients had previously said something different. In the end, decisions of competent patients trumped everything; states could erect no evidentiary barriers to the supremacy of such decisions.

Why was it so important to consider different kinds of cases separately? Consider the justification each case needs. It is much easier to know the wishes of competent patients and to know if they are ambivalent, steadfast, or wish to change their minds than it is to know the wishes of incompetent patients, where physicians cannot judge ambivalence, strength of conviction, or intelligence. Different family members may disagree about actions that are in the best interests of the incompetent patient, or what she would have wanted done. For these reasons, treating these kinds of cases differently, each with different standards of evidence, makes perfect sense.

Remember the lesson that the courts should have started with competent patients and first decided their rights at the end of life. In thinking about how to improve humans, we need not repeat the mistake of the past, so we will start with competent adults enhancing themselves.

Let’s apply that lesson. Consider Beyond Therapy, the analysis of enhancement options by Leon Kass and the President’s Council on Bioethics.[2] It does not open by discussing whether restrictions should be put on competent patients’ decisions to enhance themselves. Instead, it jumps right into decisions by parents that affect babies and future children, and then lumps these with pre-implantation genetic diagnosis in embryos, giving short kids growth hormones, and selecting packages of specific traits for designer children. Not only do these three cases differ as much as enhancing oranges, elephants, and spaceships, they ignore the historical role of competent adults in voluntary, medical experimentation.

Now consider a second famous issue in bioethics, assisted reproduction, and how the same mistake occurred there. In the early 1970s, a British documentary about in vitro fertilization set its tone by opening with footage of an exploding atomic bomb. Following this sensationalistic image, Warren Kornberg, editor of Science News, actually wrote in 1969 that ethical questions about assisted reproduction, cloning, and human genetics weighed equally in importance with those raised by the proliferation of atomic bombs.[3]

And there you have the basic mistake. Kornberg lumped helping a husband and wife, who wanted to create a wanted child with their own sperm and egg with Blade Runner and GATTACA. As an ethical issue, helping couples create wanted children should be relatively minor, but preventing nuclear war ranks as one of our most profound ethical issues, comparable to reducing the spread of HIV. It grabbed attention to compare IVF to nuclear war, but it did so in a confused, feverish way.

From the late 1950s to the mid-1970s, Yale Professor of Religious Studies Paul Ramsey and University of Chicago biochemist and physician Leon Kass most influenced the public in just these ways and, in doing so, became quite famous.[4] Ramsey and Kass ran together artificial insemination, in vitro fertilization, egg donation, surrogate mothers, cloning, and genetic engineering, condemning them all. Neither had any sympathy for the view that IVF, donation of sperm, egg transfer, or surrogacy might give infertile couples the child they desired.

Thirty years after Louise Brown’s birth through IVF in 1978, millions of people worldwide have used assisted reproduction and now happily raise children. Assisted reproduction continues to be one of the fastest-growing, happiest sectors of medicine, being truly pro-life in ways that make theocons shudder. Alarmists still claim that IVF will make the sky fall, but millions of infertile couples ignore them.

Critics also categorized in vitro fertilization with cloning humans, and confused coerced conception with chosen conception. This fuzzy thinking blinded them to the desire of infertile couples for a child. When the government banned federal funding of research on human embryos, clinics financed such research with patients’ fees, bypassing IRB’s. Freed from bureaucratic obstacles and fueled by such fees, assisted reproduction took off.

In retrospect, the hysteria about assisted reproduction added up to nonsense. In almost all cases, the new techniques merely helped infertile couples along a bit. It’s not as if scientists had created artificial sperm from chemicals.

Alarmists ran all these cases together, as well as two other different things: parental choice with state coercion, and a couple’s preferences with Eugenics. When Alarmists resort to the same tricks, can we learn from history and resist their dire prophecies? Rather than running cases together and over-generalizing, we usually need to downsize the bioethical problem. When a new form of assisted reproduction comes along, we should reject statements such as “the fate of human nature is at stake,” and substitute, “this is another small step in helping couples have the kids they want.” In reality, it’s the downsized problem that confronts physicians, not the choice to alter human nature.

Let us now turn our history of bioethics to our third topic, genetic engineering. Alarmists hurled the “playing God” charge not only about creating babies, but also about creating new combinations of genes. We can infer from the clichéd titles of not one but two books published in 1977. Playing God by journalist June Goodfield raised alarms about scientists tinkering with genes, DNA, and as her subtitle says, the “genetic engineering and the manipulation of life.”[5] In that same year, bestselling Alarmist Jeremy Rifkin, together with Pastor Ted Howard, published Who Should Play God? : The artificial creation of life and what it means for the future of the human race.[6]

For forty years, Alarmists hurled the thought-stopping phrase “genetic engineering” against geneticists. Always Alarmist, this cliché rarely enlightens. It always predicts genetic doom and usually accompanies other phrases such as, “Medicine is changing faster than our wisdom,” or “Science is changing faster than our ability to understand these changes.”

Some past predictions amuse us now. In the summer of 1965, a molecular biologist on the staff of Rockefeller University, Rollin Hotchkiss, predicted to three thousand biologists at a meeting of the American Institute of Biological Sciences that “in five years” parents would be able to order children with blonde hair, blue eyes, and fair skin.[7] He described the process of “genetic engineering” as changing the hereditary traits of cells by introducing new genes. Hotchkiss went on to describe how a dictator might want to use genetic engineering and how the future implications were like “the revolution set in motion by the atomic bomb.” Here again lies a gigantic category mistake. He noted that the first step would involve genetic intervention to fight disease, probably by using viruses.

Six months later on New Year’s Day 1966, Nobel Prize-winning biologist F. M. Burnett urged a moratorium on genetic research on humans.[8] James Shannon, the director of the National Institutes of Health from 1955 to 1968, countered that genetic engineering could prevent inherited diseases, but Alarmists had set the tone.[9]

Critics of genetic engineering always hopped from one kind of case to another: from allowing parents and physicians to choose against, say, a child with a neural tube defect to allowing parents to choose to only have perfect children, from allowing choice to being coerced into accepting the Aryan ideal. In this mistake, Alarmists assumed that parents would be unable to distinguish the two kinds of cases or would not strenuously resist such control.

In any discussion of human enhancement, we should first divide our cases into the appropriate classes with their appropriate standards of evidence. Not doing so is exactly the mistake of Alarmists, who get themselves worked up over people who want to experiment on themselves and who act as if such self-experimentation is morally the same as experimenting on vulnerable babies. It is not.

A second lesson from the history of bioethics concerns the two frame stories by which bioethicists discuss new technology. A frame for a picture sets the limits of what can be shown and determines how the picture is revealed, and thus seen, by the audience. Frames become familiar to viewers, or readers, because they allow us to predict the outcome. Mark Twain famously used the frame story of the backwoods rube who is smarter than he seems and who exploits the smugness of stupid urbanites.

In bioethics, one frame story is Alarmism and it is fueled by bioconservatism. This story warns that it is hubris for humans to try to enhance their biological natures. When hubris tempts humans to act as gods, the gods strike them down, inflicting war, infectious diseases, revolution, or death.

The second frame for biotechnology is Enthusiasm, which I use in the old sense of David Hume's History of England. This frame story is most often used by transhumanism. This story claims that humans should attempt to enhance their nature. This position could well have sprung up during the Enlightenment, when educated people had passionate faith in science. The co-discoverer of the structure of DNA, James Watson, supports this position, as have people famous in the history of eugenics, such as Francis Galton and J. B. S. Haldane.[10] More recently, UCLA bioethicist Gregory Stock defends this position, as does English bioethicist John Harris in two books,[11] as well as James Hughes, Ramez Naam, and Nick Bostrom.[12]

The Alarmist frame story has been the most publicized, especially by public intellectuals. Since his 1970 essay "Making Babies” in Atlantic, Leon Kass has attacked unnatural biotechnology. He has opposed in vitro fertilization, surrogate gestation, embryonic cloning, reproductive cloning, and using Prozac.

As chair of George W. Bush’s Council on Bioethics, Kass in 2003 wrote Beyond Therapy: Biotechnology and the Pursuit of Happiness, which opposed all attempts at human enhancement. Although it’s the official report of the entire council, every page bears the stamp of Kass’ writing. Beyond Therapy says that making our bodies stronger and longer-lived will turn our bodies into mere tools. As such, we will come to “despise” our given bodies. If we continue down this path, we will lose “who we are”—our human identity—and become something worse.

Bill McKibben, an Alarmist and naturalist, writes in Enough! that biotechnology has gone too far with assisted reproduction, genetically modified food, and cloning. We should strive, as Joni Mitchell famously sang, “to get back to the garden.” McKibben, a modern Rousseau who got his start writing for the urbane New Yorker, implies that civilization is artificial, corruptive, and unhealthy, including the science that generates the modern world. As a champion of organic farming, Slow Food, and sustainable living, McKibben opposes enhancing humans. (Presumably, he will never get the New Yorker wirelessly or read it on a Kindle.)

Simplistic worldviews will not capture the best ethical analysis of various kinds of enhancement. Why? Because for a particular kind of enhancement, many different values (or what law professors call “interests”) will compete, and we can predict that no simplistic position will be fair to all interests.

Digging into these frames reveals presumptions about why it is good or bad to enhance humans. For most bioconservatives, their primordial opposition stems from a religious worldview (whether they admit it or not) where humans are seen as imperfect creatures created by a perfect, omniscient deity. If you accept the premise that human nature is fallen, then it follows that humans will go wrong in trying to improve their natures. If you accept the premise that humans are made as they are for a reason, then not only does it make no sense to change them, it would be wrong to change them. In so doing, you would disrespect the gift of the Giver. If you believe that something Higher made each child as he is for a special reason, it's blasphemous to think that his parents could have chosen him to be healthier, smarter, or happier.

On the other hand, if you take the transhumanist position, and if you believe that humans are good, then the default position should be that humans must continuously try to enhance themselves. Medicine should not be a reluctant partner to enhancement, but a cheerleader. German medicine under the Nazi regime makes us cautious about this last statement.

Transhumanists tend to be uncritical champions of new technologies in medicine. A good example is their early embrace of robotic surgery, e.g., for prostatectomies or removal of gall bladders. Only long-term evidence will prove that robot-assisted surgery beats a sure human hand, and some anecdotal evidence already suggests that it does not. Simply adopting an attitude of acceptance to new things is not always wise.

In the last decades, transhumanists have been too enthusiastic about gene therapy. As I’ll explain later, gene therapy has been a disaster, and we’re nowhere near ready to do it routinely. “Genetic engineering,” or gene enhancement of humans, is so far away from being safe that self-confident predictions about it in the past now seem laughable. We must be careful not to repeat the mistakes of gene therapy with stem cells and some forms of organic self-medication.

Unless overwhelming evidence can be marshalled for a particular attempt at enhancement, the default position for bioconservatives is a ban. In the debate about genetically modified food, bioconservative Europeans adopted the Precautionary Principle, meaning that they won’t allow genetically modified food to be sold inside Europe until there is evidence beyond a reasonable doubt—an extraordinarily high standard—that such foods are safe. A similar view can be argued about abortion, that because you might be mistaken and because a human life might be at stake, you should always err on the side of life.

For transhumanists, the default position is to allow anything. In this regard, it is like a Libertarian view of freedoms where governments should assume maximal liberty of each couple and only restrict a liberty to prevent a clear and obvious harm to someone else from the exercise of that liberty. But the “Anything Goes” school of experimentation has risks, too, and should be tempered with evidence about safety and benefits.

As said, bioconservativism is at bottom a religious view, and a dark one at that. Why? Well, we can’t believe that we are “fallen” unless we had some place to “fall” from. Arguments that emphasize that scientists and humans lack the wisdom to attempt enhancement assume the Fall of Man and Original Sin.

I have said that bioconservatism is religious or semi-religious, but of a certain kind, namely, pessimistic religion. Pessimistic religion always endorses the status quo; it always opposes medical innovation as unnatural. Pessimistic religion fears change in medicine, the most famous example of which is anesthesia in childbirth: “In sorrow thou shalt bring forth children” (Genesis 3:16). So ministers thundered against painless birth until Queen Victoria silenced them with her demand for relief, setting an example for millions of other women, who embraced a more positive view of what religion required.

Indeed, one wonders whether modern religion can ever affirm new options in medicine. Here’s a doctoral thesis for a young theology student interested in bioethics: Can modern religions have a voice other than, as Nietzsche said, “Nay-Saying” in bioethics? As Alasdair MacIntyre might say, what medical advances is religion for?

It’s not enough for religions to position themselves as the brakes on the runaway train of medical change. Progress in medicine always needs support. Controversial innovations don’t become “change” or “progress” unless they enlist enough patients, families, and physicians to support them.

Instead of a runaway train, medical progress is more like pulling a heavily loaded freight train uphill where toll collectors every hundred yards demand fees while querying why the train needs to go further.

In retrospect, and from the start, religion should have gotten behind assisted reproduction, rather than opposing it tooth and nail. What can be more pro-life and pro-family than helping infertile couples create their own babies?

Some would object to my equation of religion in bioethics to the reactionary views of Leon Kass, Daniel Callahan, and the Vatican. Many theists today reject the premise of the fallen nature of humans and the conception of a primitive, vindictive God who would create humans with a nature that inherently tends to sin. Instead, modern theologians posit a more loving God who created free, compassionate beings capable of reflection, growth, and understanding.

But when theologians confront change in bioethics, they usually revert to being bioconservatives, checking in at the old Fallen Hotel, taking a room among their Alarmist brethren. That is the comfortable way of doing bioethics among clergy: to prohibit, to urge caution, to warn, and to urge complete consensus on a committee where one skeptic can prevent agreement.

Of course, transhumanists can be equally selective in the descriptions they advance. They may describe the successful enhancements that occurred in dentistry (from saving bad teeth to improving appearance), in optometry (from eyeglasses to laser surgery), in public health (from public sanitation to vaccinations), and medicine (from antibiotics to high-tech emergency response systems). In these accounts, they may overlook the many false starts, the many victims of experimentation, and the undemocratic nature of the decisions that created many of these advances.

As said, Enthusiasm promoted gene therapy and genetic enhancement with breathless hype. It ignored the complexities of gene-gene interactions with complex environments, as well as the ethical difficulties of determining which packages of causes create which traits. It also ignored problems of vaccinations in the history of that field.

But Alarmism has ruled for too many years, indeed too many decades, and if we must choose between frames, maybe it’s time for a little Enthusiasm. Increases in longevity and new tools from stem cells could reveal new vistas for humans, if only we possess the will to go forward. I shall argue that we can do so, and do so ethically.

■■■

This brief history of bioethics over the last half-century has two lessons, each learned painfully: treat different kinds of cases differently and be aware of the simplistic frame inside which we tell most stories in bioethics. Real life and good ethical analysis are, and should be, more complex, and will be treated as such if we just look at real cases.

Notes

1.

After a new hearing where three new people testified about her wishes, physicians removed Nancy’s feeding tube. With so many witnesses in agreement, the Cruzans met the clear-and-convincing standard and the feeding tube was removed.

2.

President’s Council on Bioethics, “Better Children,” Chapter 2, Beyond Therapy: Biotechnology and the Pursuit of Happiness (Washington, D.C.: Dana Press, 2003), 30–45.

3.

Walter Kornberg, Science News, 1969.

4.

John Evans, Playing God: Human Genetic Engineering and the Rationalization of Public Debate (Chicago: University of Chicago Press, 2002).

5.

June Goodfield, Playing God: Genetic Engineering and the Manipulation of Life (New York: Random House, 1977).

6.

Jeremy Rifkin and Ted Howard, Who Should Play God? : The artificial creation of life and what it means for the future of the human race, (New York: Delacorte, 1977).

7.

Rollin Hotchkiss, quoted by Ronald Kotulak, “And Now Your Child Built to Order: Day of Genetic Engineer Near, Biologist Says,” Chicago Tribune, August 18, 1965, 5.

8.

F. M. Burnett , quoted by Howard Simons, “Genetic Defect Victims Are Urged Not to Wed,” Washington Post, April 26, 1966, A1.

9.

James Shannon, quoted by Howard Simons, “Genetic Defect Victims Are Urged Not to Wed,” Washington Post, April 26, 1966, A10.

10.

Francis Galton, Hereditary Genius (London: MacMillan, 1869); J. B. S. Haldane, Deadalus (1924); James Watson, quoted in Michael Gerson, “The Eugenics Temptation,” Washington Post, October 24, 2007.

11.

Gregory Stock, Redesigning Humans: Our Inevitable Genetic Future (New York: Houghton Mifflin, 2002).

12.

James Hughes, Citizen Cyborg (New York: Basic Books, 2004); Ramez Naam, More Than Human: Embracing the Promise of Biological Enhancement (New York: Broadway, 2005)