Rx for health professionals: honesty, fairness, respect.

Better ethics may help restore trust between patients and providers.

In his new book, Am I My Brother's Keeper?, bioethicist Arthur L. Caplan takes on a tough job: convincing cynical late-twentieth-century people that they should treat total strangers - particularly the sick and injured

As director of the Center for Bioethics at the University of Pennsylvania, Caplan has written and taught biomedical ethics for many years. The central issue underlying most ethical problems in medicine today, Caplan believes, is the breakdown in trust that has occurred in recent years between doctor and patient, patient and insurer, insurer and health-care administrator. As advances in medical science have blurred once-clear definitions of "life" and "health," social and financial pressures have built up to create and widen conflicts of interest between those who seek care, those who provide it, and those who pay for it. But trust can be rebuilt by setting reasonable guidelines for decision making that scientists, administrators, and average citizens alike can understand, Caplan contends.

One encouraging sign of progress in bioethics Caplan points to is the emphasis now placed on "informed consent." Since the 1960s, major shifts have occurred in what most physicians consider ethical practice in treatment and research. For example, professional consensus (and, in many countries, the law) requires doctors to fully inform patients and research volunteers about the true state of their health and to fully explain both the benefits and dangers of any treatment or procedure they propose. Only when patients or research subjects understand their situation and agree in writing to accept the risks can a study or a course of treatment begin.

But "informed consent" is not always easy to obtain, such as when an accident victim is unconscious and alone but needs immediate surgery. The question of the terminally ill is more difficult: "Can those facing certain death really be said to exercise informed consent?" Caplan wonders. Such vulnerable patients and their families may grasp at any straw of hope without considering possible consequences. Moreover, if "true consent requires a balanced presentation of the risks and benefits involved," can the same doctor ever be both researcher and therapist without a conflict of interest?

To help ease the moral challenges involved in research on life-saving therapies, Caplan proposes that patients recruited for experimental treatments always have access to outside medical advice from experts who have no professional or financial stake in the outcome.

Valuable Data from Inhumane Studies

A related problem involves what to do with valid scientific data that has been obtained by methods that were unethical or blatantly inhumane. Caplan points out that research on stress, exposure to phosgene gas, and extreme cold conducted on inmates of Nazi concentration camps is still being cited in scientific literature.

Even more troubling perhaps is the continued importance of the Tuskegee study on long-term effects of syphilis, carried on by the U.S. Public Health Service for four decades using test subjects who were allowed to die of their disease even when effective treatments were available. In Caplan's words: "What physicians and public health officials know about syphilis is so strongly rooted in [these] findings . . . that, short of throwing all books on venereal and infectious diseases out of the libraries of the world, there is no way to avoid citing, referencing, and talking about the study." If even such extreme examples of coercion and abuse of human subjects does not place the scientific data obtained off limits, then by implication nothing would appear to be forbidden in the name of science.

Caplan concedes that, once data has been published, it is virtually impossible to suppress, no matter how the data was obtained. But he offers guidelines for its ethical use:

* Only use such data when no other source of the same information is available.

* Only use it in studies of vital importance (not to advance a purely commercial goal).

* Whenever such data appears, especially in a textbook or article, add a comment about the way the data was obtained so that those who use it are aware that it is tainted.

Most importantly, Caplan applauds the policy already practiced by many scientific medical journals and publishers to refuse to publish any new data, "regardless of its value or importance, if it has been obtained by immoral means, including a lack of explicit informed consent or in circumstances such as torture of political prisoners or prisoners of war."

Caplan concludes, "Future generations of researchers must see that it is good ethics, not just good data, that really matters."

Source: Am I My Brother's Keeper? The Ethical Frontiers of Biomedicine by Arthur L. Caplan. Indiana University Press. 1997. 242 pages. Available from the Futurist Bookstore for $24.95 ($22.95 for Society members), cat. no. B-2197.