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A Bioethics Crisis?

The journal Academic Medicine in its June 2008 issue published a collection of essays and commentaries contending that the National Institutes of Health should sharply increase its support of bioethics, and should offer funding to increase the number of bioethicists. A variety of reasons were given: potential new issues in the field, a lack of public confidence in clinical research, the need for a national agenda for bioethics training and research, and the coming retirement of many of the present leaders in bioethics.

As someone who spent many years raising money to support bioethics research, almost all of them bemoaning the meager and erratic support from the NIH for the field, my first instinct was to cheer. That all of those who wrote the articles and commentaries are solid and sensible people, well known in bioethics, was all to the good.

Yet the more carefully I read the pieces, the more uncertain and uneasy I became. I don’t want to reject the idea of more NIH support, but some questions are in order if the idea is to go forward.

Some of the problems are matters to quibble about and not central to my concerns. One of them is the supposed shortage, soon to come, of bioethicists, particularly younger ones. My colleagues and I at the Center have not noticed a dearth of young talent. Our journal the Hastings Center Report receives a steady stream of submissions by young authors. The field continues to grow and most university and medical schools with programs in bioethics have a solid core of recent PhDs, lawyers, and physicians. Just what evidence is there of a potential shortage?

Another issue stems from some ambiguity in the articles and commentaries themselves. There is, one the one hand, a general call for more people for “basic research and training in bioethics” and a vague mention of new issues, but on the other hand there is the persistent invocation of human subjects research as the main example of where the important problems in bioethics lie. It is as if the main role of bioethicists in the work of the NIH, and more broadly perhaps, is that of carrying out IRB research and serving as members of IRBs.

Bioethics in that role reduces, in effect, to a kind of service industry for biomedical research. If that is the real message of the articles, then one might ask why it is that more bioethicists are needed. Bioethics as a disciplinary background for participation in human subject research review is not now and never has been necessary. Well-trained lawyers, social workers, clergymen, physicians, and nurses can and have served well on research committees. While there are from time to time some knotty ethical problems, for the most part IRB work is regulatory in nature, insuring that federal ethical guidelines are being followed. Bioethicists have no special talent for that kind of work.

More troubling, however, is the seeming conflation of research in bioethics and “research ethics,” as if the one is reducible to the other. I argued in my book What Price Better Health: Hazards of the Research Imperative, that the term “research ethics” should  encompass a much broader swath of research thought and activities. Protecting human subjects is surely one of its important topics, but so also are issues of conflict-of-interest, the cost and financing of pharmaceutical research and marketing, priority setting in research (especially NIH priorities), the extent and limits of a putative moral obligation to carry out research, the assessment of potentially hazardous forms of research or hazardous outcomes of research, controversial lines of research in a pluralistic society, and enhancement research. With a little imagination an even longer list of important topics could be developed.

If the authors of the Academic Medicine articles have in mind that expanded definition of “research ethics,” that strikes me as all to the good. There would then be more for bioethicists to do than to serve the needs of human subjects research. But if the field is to be something other than a service industry, useful though that might be, then there are some reasons to doubt the wisdom and value of heavy NIH support.

My longer list of issues would in many cases require ethical analysis of the goals and mission of NIH itself. It would mean an openness to providing educational and research support for those of opposing viewpoints on its very role and social function, some of them intent on making a case against some NIH policies, practices, and scientific commitments. Could opponents of embryonic stem cell research get grants to refine their arguments? Could opponents of the sometimes heavy-handed role of disease advocacy groups in NIH priority-setting get money to critically assess their role and influence?  Or the way Congress sometimes, maybe often, caves in under interest group pressure?

How acceptable would be research aiming to show how research has historically raised health care costs, and was thus itself part of the present cost crisis, probably needing some curtailment?

In short, how would bioethicists fare if they may bite the hand of those who feed them, and how would a program that might turn out, at least in part, those whose research agenda took on the establishment itself actually last? My guess is that those who want to do that latter kind of work would best not be supported by NIH. If they defend some bad practices, they will be accused of currying favor. If they attack them, they will likely not last long.

Bioethics as a field has long been seen, at least by some, as a handmaiden of mainline medicine and health care, uncritical at the most basic levels and expected to provide moral band aids at the intermediate levels. Much greater NIH support could intensify that kind of worry, perhaps with good reason.

My own experience with some of the broader research ethics issues is that they make scientists nervous, and they make both scientists and administrators looking for continued federal grant support even more nervous. The NIH administrators will surely ask what’s in it for the NIH, and they won’t be looking for trouble. But a solid program would have to run that risk.

It would be helpful if some of the authors of the Academic Medicine pieces spelled out their ambitions a bit further.

Published on: June 25, 2008
Published in: Bioethics

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