The value of empirical bioethics research

In response to an article by Alexander Kon, I noted an ironic situation: Within his framework, the more valuable an empirical ethics study becomes, the less apparent it is that it constitutes “ethics research.” He claims that one of the highest forms of research in bioethics is the sort that improves patient care. By that standard, the development of a drug that cured AIDS would be a higher form of ethics research than assessing attitudes toward confidentiality in AIDS research or identifying disparities in access to AIDS clinical trials. Some would say drug development research is plain and simply medical research—clinical science—not ethics research. I disagree. Kon’s position is ironic when one thinks of it; but so is most of life and irony is no sign of incoherence or falsehood.* Let’s face it, a large part of ethics concerns maximizing benefits or promoting flourishing; and most of what ethicists do does not benefit humankind nearly as much as a cure for AIDS would. Moreover, if ethics pertains to right and wrong voluntary actions—what we choose to do and to become—then any kind of research can be viewed through the lens of ethics.

Nevertheless, there is little prospect that all research will be labeled as “ethics research,” and nor should it be. Just when a study deserves that label is open to debate. I’ve tried a few definitions, and they’ve failed to capture all studies that seem appropriately labeled as “ethics research” and only such studies.

In the 1990’s, when empirical research in bioethics first started growing popular, debates about its value revolved around the question whether ethics should be determined by the opinion of the majority. It should not, of course. But this unfortunate debate arose from two sources. First, too much of the early empirical research in bioethics (my own included) consisted of polling or attitude surveys. Second, the real value of attitudes research was misunderstood. It cannot determine what is right when we are dealing with matters of principle; but many policy issues involve competing principles and lack one clearly right answer. Particularly in such cases, attitude research can provide individuals with a voice, particularly vulnerable individuals who are often not heard. Additionally, attitude research—particularly when methods are rich (e.g., focus groups or qualitative interviews)—may uncover valid ethical concerns and problems that policy makers have failed to recognize and include in their calculus. Finally, attitude research may give policy makers a sense of what might fly. All three of these benefits can be observed in a simple example. Survey and focus group research has consistently found that African-Americans are nearly 3 times as likely as Caucasians to fear that if they sign their organ donor card physicians will not try to save their life. From this research with a frequently ignored segment of society, we may glean that restoring trust is essential to any good and successful organ transplantation policy.

In any case, it would be a mistake to reduce research in the area of bioethics to polling or attitude research—even if we wish to focus on social science research. Here are a few examples of findings from robust studies with interesting study designs.

-       It was long assumed that people with schizophrenia were incapable of making their own decisions whether to enroll in a research study. Yet social science research over the past 2 decades has found that most persons with schizophrenia retain the capacity to make decisions, and when their comprehension is less than optimal, simple education interventions often suffice to provide adequate comprehension of information.

-       Many physicians have claimed that having a former college cheerleader (drug rep) buy lunch for their department (sponsor a continuing education program) could never change the way they prescribe medications to their patients. Yet studies of physician behavior have shown the opposite. How is this possible when many physicians earnestly doubt they can be bought for the price of a sandwich? Because many of the psychological processes involved operate subconsciously (e.g., the tendency toward reciprocity when given a gift).

-       Some claim that we should not address the shortage of primary care physicians in the US by expanding the number of advanced practice (AP) nurses. They argue that AP nurses will not serve patients as well given that they have less scientific and clinical training, and that most patients would prefer to see a physician. Yet, reviews of outcome studies have generally found that patients’ health outcomes are typically as good and their satisfaction is frequently better with AP nurses. While the quality of some of these studies has been questioned (perhaps legitimately), physicians have yet to produce studies that show the superiority of primary physician care over AP nurse care.

Who thinks our ethical deliberations on these respective ethical and policy questions would be as sound without such data? Aristotle believed that good ethics had to be grounded in experience; social science research is capable of collecting the experience of many and sharing it in ways that enhance the practical wisdom of individuals.

* Elsewhere I’ve argued that life is both absurd and meaningful. That life is absurd seems obvious to me; that it is meaningful requires argumentation, maybe even faith. See “Absurdity, God, and the Sad Chimps We Are.”