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A once and future biomedical ethics board.

A Once and Future Biomedical Ethics Board

The congressional Biomedical Ethics Board and its attendant Advisory Committee were convinced in November 1985, but may be stillborn by October of 1988. This outcome would certainly surprise those members of the Advisory Committee already appointed to what most consider a standing committee of Congress.

The Board, which is comprised of twelve members of Congress, was established by the Health Research Extension Act of 1985 to report to Congress on ethical issues in the delivery of health care and biomedical and behavioral research. Its specific mandate was to address the protection of human subjects of such research and to monitor research and developments in genetic engineering (including recombinant DNA techniques). To achieve these ends, the Board was empowered to select an Advisory Committee, whose members would be responsible for conducting studies, preparing reports, and perhaps holding public hearings. Congress authorized the appropriation of up to $2,000,000 for fiscal year 1986, $2,500,000 for fiscal year 1987, and $3,000,000 for fiscal year 1988 to enable the Board and the Committee to carry out their functions.

The Advisory Committee was to have been composed of fourteen members, twelve "experts" in various areas of biomedical ethics, including clinicians and academics, and two "citizen members," "with an interest in biomedical ethics but who possess no specific experties." Its members were to serve on a volunteer basis (reimbursed for expenses only).

What has happened since this beginning? As of April 1988, the fourteen places on the Advisory Committee have not been formally filled and not $1 of the money has been spent. After a great deal of argument, the twelve experts have been approved. The two citizen members have not.

According to Mona Sarfaty, senior health advisor to the Senate Labor Committee, the problem has been that selection of members of the Advisory Committee has been "endlessly bogged down in politics." The chief issue, it seems, has been balanced representation on abortion. Sarfaty says that some Board members, including Sen. Dave Durenberger, and Reps. Thomas Bliley, Thomas Luken, and Thomas Tauke have insisted that at least five memberss of the Advisory Committee explicitly favor a right-to-life position. Steve Moore, legislative aide to Durenberger, rejects that analysis is "name-calling." Durenberger proposed a "compromise slate" in which every member of the Board would be allowed to select one member of the Advisory Committee. Although this proposal ultimately failed, Moore claimed that it nearly resolved the selection controversy. In Moore's view, the problem lies with the nature of the issues involved: "The Board was established to deal with sensitive issues in a committee setting rather than try to fight them out on the floor of the Senator or House. But the issues have proven too difficult even to be faced at that level."

Most of the approved members of the Advisory Committee believe that controversy over the selection of the final two members is responsible for delaying their work. They presume that when this is resolved the committee will assume its position as a standing committee of Congress.

"Not so," says Jerry MAnd, legislative aide to Sen. Albert Gore, Jr., Vice-Chairman of the Board. "Everything's on hold right now. We're waiting to see if the Board itself will be reauthorized after the fiscal year 1988."

Bonnie Browne, legislative aide to Rep. Bill Gradison, Chairman of the Board, disagreed with Mand's assessment of the Board's status. "Everything is not on hold," she said. "Names for the vacant slots are being circulated via memos all the time (although the Board has not met this year). If the two slots of the citizen members could be filled tomorrow, they would be." Browne felt strongly that if the two slots were filled, chances for reauthorization would be much greater.

However, the prospects for reauthorization are not optimistic. The two committees responsible for reauthorization are the House Energy and Commerce Committee, chaired by Rep. Henry Waxman, and the Senate Labor Committee, chaired by Sen. Edward Kennedy. Peter Budetti, aide to Waxman, says Waxman admits the selection process has been a "headache." While he has not been taken a public stand on the question of reauthorization, according to Mand, Waxman is leaning against it.

Kennedy, meanwhile, appears strongly opposed to reauthorization. In Sarfaty's view, Kennedy favors disbanding the Congressional Board and Committee and reestablishing an Ethics Advisory Board under the Department of Health and Human Services (as it once existed before the Carter Administration let it lapse). In this way, regulations on issues like fetal research could be reviewed and members could advise HHS on research funding decisions in a "somewhat more neutral, slightly less politicized climate."

However, this proposal could well undermine the very reason for the Congressional Board in the first place. As Jerry Mand observed, the earlier President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research provided an excellent and necessary report but there was no pressure on anyone to act on its findings. A Congressional Board, on the other hand, would force policy-makers to face these issues on a continuing basis and formulate laws and policies to deal with them. Yet the Biomedical Ethics Board was only authorized for three years. As Browne notes, "Perhaps the Board is not the way to approach these issues but Congress will have to find some way to face them. Questions of biomedical ethics are not going to disappear."
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Title Annotation:Congressional Biomedical Ethics Board
Author:Stack, Margaret Fletcher
Publication:The Hastings Center Report
Date:Apr 1, 1988
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