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IMH Happenings

11/6/2006
Bioethics must listen to the public

By Howard Brody
The Daily News

Published November 5, 2006

Since 1972, when I entered the field called “bioethics,” we've thought hard about the ethical issues in health care and biomedical research, from genetics, abortion and stem cells to the humane care of the elderly and the dying.

We've made great progress. No hospital had an ethics committee in 1972 and few medical schools required courses in ethics. Today, both are commonplace.

But something's missing.

In 1972, we thought the biggest obstacle to making medical care more “ethical” was the recalcitrance of “M.Deities” who assumed that they could simply tell patients what to do.

Much of early bioethics came down to telling these doctors, “Doggone it, listen to the patients — it's their lives, not yours!”

But has bioethics itself really “listened to the people”?

Here and there, yes. The state of Oregon launched Oregon Health Decisions in the early 1980s. Town meetings across the state addressed methods of paying for health care and the categories that health insurance should cover.

Other states emulated this signal success with grass-roots debates about access and entitlement to health care.

Similar projects addressed other issues, including a recently-completed study of genetic privacy that showed you could have effective dialogue about bioethics in minority, poor and non-English-speaking communities.

Unfortunately, these efforts have been sporadic and non-coordinated. Bioethicists engage the community on a single issue, record community members' views and disappear.

Back home at the university or the medical center, work goes on as before. Few bioethicists have systematically folded the results of community dialogue back into textbooks, journal articles, academic conferences and other media by which we spread the word.

Two things struck me when I came to UTMB as director of its Institute for the Medical Humanities.

First, the upper Texas coast where UTMB sits is among the most culturally diverse areas in the U.S.

Second, our medical center already has a number of research and clinical care projects that reach into the various communities, even those several hours' drive from Galveston.

Where better to launch sustained bioethics community dialogues?

We should identify six to 10 communities used to working with UTMB that want to add a bioethics component.

We could go to them perhaps twice yearly with a new bioethics topic.

In early 2007, for instance, one subject could be the law that allows hospitals to stop medical treatment considered “futile”; the coming session of the state Legislature also will be vigorously debating that issue.

Each dialogue session could consist of six to eight evening meetings of about two hours each. The goal would be to have people grapple with and chew on all parts of the issue until they have identified the core ethical values.

For a while, academic bioethicists could pick the topics. Soon, the community groups could start to set their own agendas. They'd likely identify important ethical issues that were not on academics' radar screens.

Finally, the bioethicists would find ways to routinely record and disseminate the wisdom gleaned from these sessions.

The time is ripe to launch a major, ongoing community dialogue project in bioethics. We could lead the way for the rest of the nation.

Dr. Howard Brody, is director of UTMB's Institute for the Medical Humanities.

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