Chapter 18

Conclusions and Six Practical Proposals

Despite a barrage of propaganda to the contrary, the last fifty years have not seen great medical progress. Little systematic progress in human enhancement has occurred, and the success that has happened has been sporadic and often financed privately.

With each success, Alarmists moan that we are corrupting our natures, exhibiting narcissism, and falling into Eugenics. Of course, in bioethics it’s always safer to criticize than to praise. If you get behind an innovation, it might create unexpected harm, and later, you might be criticized. Better to imply that life is perfect as it is.

Over the last decades, the worst debacle occurred with embryonic stem cells. If the National Institutes of Health had funded translational stem cell research from the start, breakthroughs in medicine would be a decade closer now.

We can’t wait on Alarmists to come around to the pro-enhancement position; they never will. (Although when their own children and grandchildren need artificial hips, modafinil, and assisted reproduction, they will certainly use any advances.)

Equally true, we can’t be uncritical enthusiasts about new medical technology. Debacles in gene therapy should not be repeated with stem cells. No matter how much we need cures and want to defeat aging, new technologies must be tested in randomized clinical trials where the financial interests of innovators do not bias the results. Too much of experimental enhancement is fueled by desire for profits, without any corresponding oversight.

Overall, progress is a slog. Resistance to vaccinations grows, gene therapy is going nowhere, and steroids, modafinil, and other efforts are tested in secret, with no accountability, transparency, or publicly verified results.

The worst thing we can do, which the media sometimes fosters, is to just sit back and assume that progress will occur: that humans will get better, stronger, live longer and better, and that we need make no changes in how we think about ethics or how we fund human enhancement. This history of progress in medicine, especially where ethical criticism enters, is two steps forward, three steps backward, four steps forward.

With all this in mind, I offer the following six practical proposals to move us forward:

1. Create a Database to Study Covert Attempts at Self-Enhancement

To have the best base for developing good public policy, we should assemble the most extensive knowledge of past enhancements—chemical, mechanical, pharmaceutical, nutritional, somatic genetic, and germ-line genetic—and understand the forces that brought about good and bad results. We should also understand any unexpected consequences.

Because so much of this has been sub rosa, we need to find a way for citizens to anonymously report what they’ve been doing. If thousands of athletes secretly take steroids, we need to know about this and find a way to follow them for decades to discover if they’ve harmed themselves. If thousands of patients regret cosmetic surgery but are too embarrassed to tell anyone, we need to know that. If thousands of college students take Ritalin or Adderall to study for exams, we need to follow that trend.

Consumers Union, Union of Concerned Scientists, where are you? We need an anonymous, confidential way that people and physicians can report both good and bad results.

These efforts must be international. Some enhancement attempts will be conducted offshore and will vary by culture (some cultures will accept enhancement faster than others).

There is a great deal of self-medication going on that we need to know about. Simply walk into any health food store and gaze at the bewildering variety of products sold. St. John’s wort is sold as an antidepressant; kava is used to calm the nerves, and there are a range of products for better skin, sexual function, or digestion. As with aspirin (or acetylsalicylic acid, derived from the bark of willow trees), some of these herbs are likely to work. We should have some formal way of knowing how dangerous these herbs are and whether people are wasting their money on them (they are used most by people with little or no medical coverage).

Resistance inside medicine once existed for studying nontraditional medicine. In U.S. medical centers, Western practices were seen as the only good medicine. Gradually, this view weakened. The stunning success of LASIK surgery, long practiced in Russia, showed how blind American ophthalmologists had been.

In the last decades of the twentieth century, physicians learned that patients often took herbs and supplements that might interfere with prescription drugs, and that no one had studied these herbs carefully, nor did a reporting requirement exist about adverse events from using such herbs. As a result, Congress created the National Center for Complementary and Alternative Medicine (NCCAM) in 1998 to study such herbs and supplements. Now, if you want to learn whether the money your aunt spends on chondroitin or glucosamine is wasted, you can click on the NCCAM Web site.[1]

Nevertheless, it is a continuing scandal that Americans may die from a dangerous supplement, and no store or health practitioner is legally bound to report anything about such deaths to any authority. Some European countries do have such requirements, which is why we know that kava caused several patients to lose their livers.[2]

We need a center where people could report adverse events from taking herbs, vitamins, and minerals, as well as from taking steroids, growth hormone, and any other substance not currently covered by laws requiring mandatory reporting. Ideally, this would be an international center. One of its main jobs would be to track the results of millions of people who self-medicate with off-label uses of prescription drugs.

2. Create a National Center for Human Improvement

We need a similar site and national center for enhancement medicine, i.e., a center dedicated to improving existing human brains, bodies, moods, and life spans, as well as doing the same for fetuses, newborns, preschool children, and future humans. A National Center for Human Improvement (NCHI) could fund research and pay top scientists to review proposals, like the system used by NIH. Wouldn’t it be great to have fMRI studies of caffeine versus modafinil versus amphetamines for effects on mental competition? Memory loss?

Because we always need to follow the money trail in bioethics, we need to ask how pharmaceutical companies could make money in developing cognitive enhancers. One solution is for the U.S. Food and Drug Administration (FDA) and insurance companies to reject the old distinction between therapy and enhancement, and let people get reimbursed for developing enhancing drugs.

Suppose that, for the last century, the U. S. government had been funding not just therapy for damaged brains but brain enhancement. Who knows where we would be now? And who knows how many side benefits might occur from doing so for brain injuries? We could be so much more than we are, if only we had the courage to pursue that vision.

Inside that center, a special place should be reserved for improving humanity through public health. As this book has shown, incremental changes over time in this area will benefit more humans than any sensationalistic changes in our genome.

3. Publicly Fund Comparison Studies of Drugs, Supplements, and Cosmetic Procedures

Millions of expectant parents seem to be experimenting on their fetuses with supplements, prescription vitamins, and other activities, such as putting the songs of Baby Mozart on a pregnant woman’s tummy. Wouldn’t it be nice if someone studied these efforts and reported on them systematically?

In 2012, under a new federal law, Americans will pay $1 to fund “outcomes research” in medicine. Too bad citizens can’t fund the same for enhancement medicine. If they had, perhaps French, Brazilian, and Venezuelan citizens wouldn’t have to remove 60,000 breast implants filled with substandard, industrial silicone.[3] If they had, after one French woman died from a rare leukemia after her implants leaked, thousands of French women wouldn’t be agonizing about whether to remove or replace their implants.[4] French authorities brought criminal charges against the owner of the company making the implants.

Similarly, if physicians must practice outside their training by doing liposuction or facial peeling, let’s study whether their results match those of trained surgeons and dermatologists. If they don’t, such “practice shift” should be made illegal.

4. In Bioethics, Law, and Public Policy: Use the Method of Analyzing Different Kinds of Cases Separately and Respect Complexity

The usefulness of this method is proved by the history of bioethics, by the arguments given, and by the results of this book.

Consider how brilliant Harvard intuitionist philosopher Frances Kamm criticizes Michael Sandel’s argument against parents using drugs or genetics to enhance natural gifts of children:

To the extent which Sandel allows training and appliances to be used to transform gifts, nothing in his argument rules out using drugs or genetic manipulation that do exactly the same thing. So suppose that a certain amount of voice training is permitted to strengthen the vocal chords. Would a drug or genetic manipulation that could strengthen vocal chords to the same degree also be permissible? If the argument Sandel gives does not alone rule out training, it alone will not rule out transformation by drugs or genetic means, because a girl is transformed to the same degree by each method. If appliances such as running shoes are allowed, why not genetically transformed feet that function the same way?[5]

As a logical argument, this reasoning is impeccable if the results are exactly the same, if the attempts are exactly the same, and if the motives are exactly the same, which Kamm seems to assume, but those are huge “ifs.” In subsequent sentences, she notes that Sandel may need, and does not give, a special argument that using drugs or genetics to transform capacities has moral significance, i.e., they differ morally in crucial ways from ordinary parental training and influence.

But background conditions immediately indicate that these three types of enhancement do differ as means of enhancement. Life is messier and more complex than tight, logical categories allow: voice training is slow, requires effort by the child and involvement by parents (taking the child to lessons, finding a good teacher, attending concerts). In contrast, a drug that could strengthen vocal chords “to the same degree” not only lacks these qualities but runs the risk, as all drugs run, of being too-hastily approved by the FDA at the urging of drug companies, of being prescribed too widely off label to the wrong population, and of making children dependent on it. Similarly, a genetic change in the vocal chords, whereas Kamm presumably means a change just in this child’s genes and not in her descendants, runs the risk of innumerable things going wrong, none of which justify better vocal chords.

Finally, because children are vulnerable and must suffer the decisions of their parents, the degree of risk inflicted on them does matter, especially when medical professionals must administer the risk-taking means. And the different degrees of risk to vulnerable children create a moral difference in the means employed.

I have been teaching about ethical issues for nearly forty years, and I’ve noticed that beginners often want to discuss a problem too abstractly. It’s tempting to think there’s one yes-or-no answer to be discovered by thinking about whether enhancing humans is moral or not. But that’s almost never a helpful way to approach real-life problems. Real ethical problems usually show us more, rather than less, complexity.

Consider the desire of some parents of Down children to normalize their child’s facial appearance through surgery. The eyes and ears of such children can be changed remarkably. Is that an enhancement or does it just normalize children with a defect? One argument for saying the latter is that under that categorization, group medical coverage would be more likely to pay for the operations.

From my viewpoint, such surgery is cosmetic and is enhancing, but if it makes life better for such children and their parents, not only should it be allowed, but group medical coverage should pay for it on Rawlsian grounds.

Recently, CBS News published a story criticizing a program at Duke Medical School that promised cancer patients a personal-genomic chemotherapy.[6] Hailed for five years as a miraculous breakthrough, it turned out to be fraudulent, and how could it not be otherwise? Given our discussion about complexity in chapter 15, and the dangers of hucksterism with personalized genomics in chapter 9, such fraud seems inevitable. To prove that one chemotherapy suppressed tumors better in me than you, scientists would need thousands of tumors, DNA samples, and studies. Those have not occurred, even in animals, and it is a big jump from animals to humans. Given complexity, we will need a country such as Iceland to sell their medical records and DNA of all its citizens, as they did for DeCode Genetics. We will need high-powered computers parsing DNA samples, of the kind used by Craig Venter and Francis Collins in finishing the Human Genome Project. But that is a long time off, and in the meantime, we should learn to beware of simplistic answers to complex questions.

5. Systematically Study Enhancements Now Rather than Later

I want to make two final pleas here for a systematic study of human enhancement: First, there is the argument from a national security viewpoint. Other countries and their intelligence/military branches will undoubtedly employ enhancement techniques to gain an edge. Not all of them are liberal democracies. Can we twiddle our thumbs while others pursue objective knowledge of better bodies, minds, moods, and longevity? Improve the IQ of whole generations of their kids while we debate Alarmists who love us as we are?

Second, contests in the global marketplace will be increasingly won by those who are the smartest, who are the most knowledgeable, and who possess the best tools. During the next century, surely the Pacific Rim will rise to challenge the rest of the world. Already possessing a tremendous work ethic, Asia may surpass everyone.

Already, countries such as Singapore and South Korea pour vast sums into biotechnology. The years under George W. Bush and Leon Kass allowed these Pacific Rim countries to get ahead of us. Will biotechnology be the way North America stays ahead or will its Puritan heritage explain why it failed?

I’m not arguing that we should study enhancement because “it’s going to happen anyway.” Rather, I’m arguing that others are likely to try to make it happen, and that if we stagnate with Alarmist self-criticism while they do, we won’t have the chance to compete and we will be forced to play catch-up in crisis mode. If we embrace it now, we can do it ethically and publicly, not in some covert lab of the armed forces.

6. Elevate the Debate beyond the Two Frames Stories of Alarmism and Enthusiasm

Alarmists such as Francis Fukuyama, Leon Kass, Bill McKibben, and Michael Sandel resemble scouts on the U.S. frontier at the time of the Mayflower. They hear rumors of a distant battle with Native Americans, thousands of miles away on a shore across the country; these Alarmist scouts warn us of the dangers of traveling there. Other scouts, Enthusiasts, hear about that shore and eagerly want to go there, pooh-poohing possible dangers along the way.

Meanwhile, as winter approaches back at Plymouth Rock, we’re hungry and trying to grow corn, wondering why our scouts aren’t helping. We appreciate the good intentions of scouts, for they think they’re helping us, but wouldn’t it be better for all of us if everyone focused on practical steps that we can take right now to help?

Mr. Fukuyama, we don’t need to worry about genetics changing human nature because it’s not going to be a problem. Genetic experiments on babies will not be allowed because they’re dangerous, will be extraordinarily complex to evaluate, and never gain ethical traction. A fortiori, the same goes for experiments that would change the human genome or try to improve it.

Practically, we’re going to live longer and better; we already do. Let’s embrace it, find ways to distribute it more fairly, study it scientifically, and move forward together.

Notes

1.

http://nccam.nih.gov/ For example, “In a study published in the New England Journal of Medicine, the popular dietary supplement combination of glucosamine plus chondroitin sulfate did not provide significant relief from osteoarthritis pain among all participants. However, a smaller subgroup of study participants with moderate-to-severe pain showed significant relief with the combined supplements.” News release, February 22, 2006.

http://nccam.nih.gov/research/results/gait/

2.

Fu S. et al., “Influence of Kavain on Hepatic Ultrastructure,” World Journal of Gastroenterology (January 28, 2008), 14, no. 4, 541–46.

3.

David Jolly and Maia de la Baume, “France Recommends Removal of Suspect Breast Implants,” New York Times, December 24, 2011, A6.

4.

“Maia de la Baume, “Frenchwomen Worry about Suspect Breast Implants,” New York Times, January 17, 2101, All.

5.

Frances Kamm, “What is and is Not Wrong with Enhancement?” Faculty Research Working Papers Series, John F. Kennedy School of Government, Harvard University, May 2006, RWP06-020, 25.

6.

“Deception at Duke: Fraud in Cancer Care?” 60 Minutes, CBS News, February 12, 2012. http://www.cbsnews.com/8301-18560162-57376073/deception-at-duke/