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The Research Freedom Act.

Although the federal Research Freedom Act of 1990 (HR 5456) was defeated last term, its sponsor, Rep. Henry Waxman (D-Cal.), plans to reintroduce the bill in January, according to staff attorney Ruth Katz. Like its predecessor, the new legislation would overturn Health and Human Services Secretary Louis W. Sullivan's indefinite moratorium on federal funding of fetal tissue transplantation.

The Research Freedom Act of 1990 incorporated ethical safeguards recommended in 1988 by the NIH Human Fetal Tissue Transplantation Research Panel, requiring: that fetal tissue be donated without stipulating who may (or may not) receive it; that tile donor not be informed of the recipient's identity; that the research be conducted in accordance with state and local law; and that the sale of fetal tissue be prohibited (Americati Academy of Pediatrics, Government Activity Report, September 1990).

Beyond overturning the funding moratorium, the legislation would significantly limit the Secretary of Health's freedom to restrict not only fetal tissue research, but any biomedical or behavioral research under consideration by the NIH. The bill calls for the secretary to convene a special Ethics Advisory Board, composed of scientific, legal, ethical, and religious experts, with final authority for approval of research proposals. Once a protocol is reviewed and approved by ail institutional review board and a peer-review group, NIH funding could be denied only on the recommendation of the Ethics Advisory Board ("Fetal Tissue Research-Move to Overturn Ban," Nature 16 [August 1990]: 598).

Like the earlier bill, the new legislation will again be introduced in the NIH budget package.

Pending the legislative fate of the Research Freedom Act, however, several patients' organizations are considering legal action against the moratorium. Among them is the Chicago-based United Parkinson Foundation, on whose behalf attorney Neal Weinfield of Schiff, Hardin & Waite is evaluating possible challenges to the ban. In September 1990, the Journal Nature reported that the Association of American Medical Colleges commissioned a similar evaluation by the Washington, D.C. firm of Fulbright and Jaworski ("Fetal Tissue-Will Ban Provoke Challenge?" 6 September 1990, p.4).
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Title Annotation:act introduced in Congress that would overturn the moratorium on federal funding of fetal tissue transplantation
Author:Crigger, Bette-Jane
Publication:The Hastings Center Report
Date:Jan 1, 1991
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