What do bioethicists do? According to a recent Boston Globe op-ed by the Harvard cognitive psychologist Steven Pinker, they needlessly get in the way of saving and improving human lives by throwing up ethical red tape and slowing the speed of research, and in so doing, they undermine their right to call themselves ethicists at all.
In principle, it is correct that if 250,000 people die each year of a disease that is potentially treatable, the cost of every year’s delay in research is 250,000 lives. And it is certainly terrible to lose so many people to unnecessary delays. But Pinker doesn’t cite a single specific example in which bioethical scrutiny has produced such a result. Certainly, the withholding of experimental drugs has cost lives; for example, ZMapp, an experimental drug to treat Ebola, was not readily available to people in several African nations who were dying of the disease. Yet there was little of the drug on hand, in any case. But the problem here was not ethical red tape; it was the underfunding of research to treat “exotic” infectious disease.
Pinker’s unfortunate and potentially dangerous message assumes a very thin conception of ethics. It’s a stripped-down brand of utilitarianism that would make the sacrifice of current lives for unknowable future gains in human health and longevity morally obligatory. It is a surprising ethical view for Pinker to adopt, since he admits in the same piece that it is difficult, if not impossible, to predict the future and cites evidence for precisely that conclusion. But the morally naive find thin utilitarianism quite attractive: Isn’t it just obvious that it is always morally better to save the greater number of people?
Well, no, it isn’t. The subdiscipline of bioethics is motivated by the rejection of the idea that numbers — lives saved, amount of happiness units generated — ought to be sole determinant of our ethics. Consider, for example, the uninformed participation of African-American men in the infamous Tuskegee syphilis study and the harvesting of kidneys from life-term prisoners to meet existing urgent need. In each case, palpable harm and increased risk to individuals might be justified in terms of the number of lives that could be saved or improved. However, we balk at the idea of using human beings as a means to achieve other ends, even when that use can benefit and even save the lives of other human beings.
Why? Because we tend to agree, as Pinker himself does, that human beings have a special status. We have rational capacities that allow us to choose the values that will govern our lives, and in some sense, we own our own bodies. We believe that we are owed respect — for our choices and refusals and for our ability to determine (within the limits of possibility) the course of our lives. Maintaining one’s dignity amounts to receiving that respect, just by virtue of being human.
There is nothing the least bit nebulous about this. And the notions of dignity, sacredness and social justice do not obstruct the stupendous implications of biotechnology. Pinker’s central point — that bioethicists should get out of the way of biotechnological advances that could save human lives — rests on the very same assumption that human life has unique value. Otherwise, how could maximizing the number of people saved matter so much?
Contemporary bioethics is not beyond criticism. At its inception many academic philosophers questioned its intellectual credentials, taking it to be a kind of ethics lite. And, when its representatives are quoted in mainstream media, they often appear to be stating the obvious, because there is rarely space for the presentation of any arguments. In addition, professional codes of ethics, many modeled on medical ethics codes, can stifle hard moral scrutiny of business and engineering decisions, because their mere existence serves as a proxy for real discussion (with participants rationalizing that if they are not transgressing explicit rules, they are ethically in the clear).
But most bioethicists do real and important work. They sit on hospital ethics committees along with physicians, nurses and palliative care specialists helping patients and their families make morally defensible decisions about end-of-life care. They serve on institutional review boards that carefully evaluate all kinds of research involving human subjects, paying special attention to studies conducted with members of vulnerable populations (for example, the mentally ill, the very elderly, children and prisoners). They play a role in the development of response protocols to epidemics. In the United States they even advise the president. The National Institutes of Health has made ethics training a requirement for all federally funded research, the National Science Foundation funds initiatives in ethics education, and among the criteria for academic programs to receive accreditation from the Accreditation Board for Engineering and Technology, they must demonstrate the ways in which they teach ethical responsibility.
Occasionally — as evidenced by a recent paper about the ethical use of a gene-editing technology, CRISPR-Cas 9, which Pinker appears to have in his sights — bioethicists, together with scientists, issue calls for moratoriums on the carrying out or particular application of certain types of research. Not all of these calls are motivated by mere squeamishness, particular religious commitments, lily-livered cowardice or professional envy. In fact, what lies behind the caution is the same idea that Pinker thinks points in the opposite direction of risk: the value of human life.
The difference lies in whether we value human life in general or individual human beings. Pinker appears unaware of this distinction and its implications for how we morally assess biotechnology. Citing the Global Burden of Disease Project, he reports that in 2010, 2.5 billion human years were lost “to premature death or compromised by disability.” If you’re thinking primarily about numbers, then you will be impressed — and, like Pinker, object to any action that apparently impedes the development of technologies that would reduce that number. But at the same time, his rhetorical hook is about how much happier each of us would be if our loved ones did not suffer premature death or protracted and untreatable illness. He cannot have it both ways. We would be equally horrified if a loved one were exploited for scientific research, even if that research contributed to a greater number of human years.
When I think about a dear friend who is dying of pancreatic cancer, I think about how his death will contribute to the total of human years lost: If we assume that, absent the cancer, he would have lived to age 90, dying at 50 means a loss of 40 human years. But I also think about the unique individual he is and about the quite particular experiences he and I will not be able to enjoy together.
Bioethicists, collaborating with scientists and patient advocacy groups, are focused on how to balance these two very different perspectives to assess the moral permissibility and wisdom of pursuing certain kinds of research. They are not scientific party poopers, needlessly delaying important research with red tape. Rather, they are vividly aware of the role that mortality — and all that it involves — plays in determining what it means to be human.