Chapter One RE-CREATING MEDICINE BY RE-CREATING MEDICAL ETHICS Amongst medical people, a quack is a man who does new things. --The Illustrated American, circa 1855, quoted in defense of physician J. Marion Sims It is not uncommon for anthropologists, when studying primitive cultures, to encounter taboos against behaviors that were originally prohibited for justifiable reasons but that now are clearly counterproductive. Because the banned behaviors have been forbidden for so long, no questioning of them is possible. This book challenges taboos that no longer make sense in contemporary medicine, such as prejudices against paying for transplantable organs and reproductive help, originating humans by cloning when safe to do so, allowing parents to choose traits of children, and expanding choice in enhancement medicine. This book also discusses letting the Internet empower patients, whether genes should be patentable, and a new role for bioethics, one not so adoring of the status quo. Ethical rules arise out of a particular time and context in human history; the same is true for the ethical rules of medicine. Periodically, such rules need to be reexamined: we should not live for the rules; the rules should live for us. When they no longer do, they should be changed. The vast majority of physicians are conservative about changing moral rules. If you are a physician in our culture, this is the way you get perceived as wise. If you are a specialist and need referrals, you had best not be perceived as radical about bioethics. American physicians make a lot of money, and making that kind of money causes people to resist change. So there is a vacuum for bioethics to fill in questioning ethical assumptions that operate in medicine. Although this role harkens back to Socrates, not many bioethicists have embraced it. Perhaps that is why the two leading speakers at the 1999 national meeting of bioethicists quite unintentionally chose similar titles for their talks: "Why Has Bioethics Become Boring?" and "Broadening Bioethics' Agenda." Why was there a need for such talks? One answer is that bioethicists have become too timid and respectful of the present state of medicine. Stuck in a rut of their own making, they appear on television only to complain about slippery slopes, threats of new reproductive options to the family, and to chant the mantra that "technology is changing faster than our ability to understand it." In truth, this is a little boring. If we look at change in medical ethics more generally, we should remember that there is always an ethical opportunity cost in not going forward. Worries about slippery slopes, parents wanting only perfect babies, and our becoming Nazis were appropriate at the beginning, but this is not what constitutes all of bioethics. In 1860, Alabama physician J. Marion Sims inseminated wives with their husbands' sperm in attempts to overcome infertility. Producing one pregnancy this way, Sims was universally condemned for trying to produce babies "unnaturally" and for assisting women to commit "adultery." (Sims later founded the specialty of gynecology and, in New York City, the first hospital for women.) This might be just another amusing historical anecdote of how enlightened we are now compared with "way back then," were it not for the fact that Sims's idea did not become accepted in the United States until the 1960s. Thousands of couples remained barren for a century when they might have been able to have children. The history of medicine is especially illuminating here. There have been few great improvements advocated in medicine where the proponent has not been vilified as being unprofessional, avaricious, uncaring of his patients, and immoral. When J. Marion Sims suggested that some physicians should study and treat the special problems of women, he was ridiculed for wanting to be--using terms of great derision in his time--a male midwife or a women's surgeon . In this case and many more in the history of medicine, moral rebuke has been a weapon of harm to humanity. Louis Pasteur and Joseph Lister were accused not only of false and dangerous views but also of immoral views. Today, especially in controversial areas where our deepest taboos operate--in reproductive ethics and in commercializing body parts--both medicine's and society's morality need to be reexamined. HOW WE GO WRONG When we try to talk about changing a moral rule in medicine or elsewhere, we are often stuck in conceptual traps that prevent progress. This book will expose and attack these "ruts." Here's a preview: 1. Conceptualizing issues in simplistic oppositions: A long-standing pattern in medical ethics is to see complex issues in only black, or-white,, simplistic ways. The twentieth-century philosopher Ludwig Wittgenstein noted that, in ongoing philosophic debates, although the first step often escapes notice, it is absolutely crucial to how the debate is conceptualized. The issues discussed in this book usually have a classic, false first step (for example, the thinking that we can only get organs donated either through pure altruism or a crass commercial market in body parts, with no in-between solutions). 2. Olympian standards for new options: Especially in reproductive ethics, we demand that physicians and couples using new services be saintlike in motivation, and we want guarantees of normal babies, although we tolerate almost anything in traditional, sexual reproduction. 3. Distrust of choices of ordinary people: When at-risk parents seek to test themselves or their embryos for genetic disease, they are instantly accused of wanting only "perfect babies." Discussion of creating better kids too often assumes that parents are improperly motivated. 4. Confusing distributive with evaluative questions: Opponents say we shouldn't create drugs or genetic enhancements to make smarter kids or create smarter kids by cloning, because we can't guarantee equal access to these goods. But we don't need to know how to distribute scarce, life-saving dialysis machines to know that they are good. These are separate questions. 5. Demonization of new inventions as "technology": New machines (computers) or new ways of creating families are seen as threats to our humanity, rather than as expressions of it. More often, new inventions are just neutral tools. For example, computers can be used to humanize or dehumanize medicine. The phrase "reproductive technology" is highly misleading and biased. 6. Letting sensational cases skew our thinking: When one case of commercial surrogacy goes awry, or when some "models" allegedly want to auction their eggs on the Internet, we incorrectly generalize to a thousand other cases where nothing similar occurs. So blinded are we by the media's extreme cases that we fail to heed normal rules of evidence, reason, and arithmetic. 7. Ignoring the reality of mixed motives in people: Most of us are neither saints nor villains. We are unlikely to donate bone marrow to strangers, and we are also unlikely to kill strangers. If public policy about organ donation, gene patenting, and parenting were to reflect this reality, we would have better results. 8. Failing to note the opportunity cost of doing nothing: When a new way of getting organs or offering reproductive assistance is discovered, opponents characteristically take a shotgun approach, throwing up every possible objection. Even if every objection is answered, the overall effect is a lingering sense that it is better not to change. Nowhere do people evaluate all the opportunity costs of being overly cautious and timid. 9. Ignoring the role of money in discussing issues in bioethics: Money may not make the world go 'round, but it is certainly worth paying attention to. Whether in medicine or academic biology, there are profound questions about the role of money almost everywhere, including biological research, assisted reproduction, and organ transplantation. 10. In bioethics, failing to advocate positive changes: Too many bioethicists are usually just naysayers: physician-assisted dying is wrong, human cloning is unthinkable, paying surrogate mothers exploits women, paying young women for their eggs destroys the family, germ-line genetic therapy is too dangerous, and allowing couples more choice about traits in children is eugenic. We are trained to be critical and condemnatory, not positive and supportive. Sometimes, bioethicists need to get behind and advocate new changes. There are other mistakes people often make in discussing change in medical ethics, but the foregoing are the chief ones. I will discuss many examples of these mistakes in the rest of this book. THIS BOOK IS DIFFERENT I wrote a book in 1998 opposing some of the horrified reactions to human cloning. In doing so, I was mindful of the lack of real thought in most people's gut reactions to that topic. I wrote this follow-up book because I find many of the same problems with many people's refusal to consider new ways of thinking about organ donation, reproductive help, computers in medicine, genetic choice, and bioethics. Finally, the topics discussed in this book are in some sense unavoidable: they loom on the frontier of twenty-first-century medicine. As such, they pose the most exciting issues in journalism, health law, biology, medical sociology, and theology. The work here is almost all conceptual, and bioethicists are on the point, for we cannot look to the law or public policy, which are generally far behind. There is honest work here for bioethicists and others unafraid of entering new terrain. True, risks abound in entering such unknown territory: one will be mistaken at times, either in fact or in judgment. So be it. But if you wait until all the new territory is explored and the maps are made, you are not participating in the discovery but following the course laid down by others. Copyright (c) 2000 Rowman & Littlefield Publishers, Inc..
