The US National Institutes of Health (NIH) has set up a committee to coordinate responses to new ethical issues and to anticipate future quandaries. The initiative comes at the end of a year that has seen heated public disputes about cloning and the use of placebos in AIDS-related trials in developing countries, and the breach of an embryo research ban.
The Trans-NIH Bioethics Committee was established this autumn on the orders of Harold Varmus, the NIH director, partly in response to a recommendation by an advisory panel that an NIH-wide committee should deal with ethical issues related to genetics (see Nature 385, 756; 1997).
But Varmus decided to make the committee's mandate broader. He felt “it was important to have substantive and frequent internal discussions on ethical, legal and social issues, so that we would be less reactive and more proactive,” says Lana Skirboll, NIH deputy director for science policy, who chairs the committee.
The committee comprises senior staff representatives from each NIH institute, centre and division, and has more than 30 members. It meets privately once a month and at its three meetings so far it has discussed the capacity of the mentally ill to consent to participation in research, and medical records privacy. Future topics will include xenotransplantation and the ethical use of stored tissue samples.
A subcommittee of the new body is drafting recommendations in a ‘white paper’ on the confidentiality of research records and patient access to them. Expected in draft form next month, the paper will be circulated for advice and comment to scientists and patients’ advocates. Ultimately, the committee hopes it will influence Congress, which is due to draft a privacy law by 1999.
But the white paper is an exception, says Skirboll. In general, she says, the committee's role is not to formulate policy but to flag issues that need attention from all parts of NIH, and “to keep ourselves on board with what's going on”. Then, she says, “when we need to develop NIH-wide consensus, there is a forum in which to begin that discussion.”
Skirboll cites growing public interest in bioethics as the reason why the NIH has moved now to establish an ethics committee (see Nature 389, 658–663 1997).
NIH has launched separately a department of clinical bioethics at the Warren Magnuson Clinical Center on the NIH campus in Bethesda, Maryland. The department will start with a budget of $500,000 and five permanent staff.
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Science, Technology, & Human Values (2003)