Research/Innovative Populations/Craft Ethical Guidelines

Emory University, Atlanta GA

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): The objective is to develop national consensus guidelines for ethical research with two unusual populations: the "nearly dead," those patients for whom a terminal wean is independently planned, and the "newly dead," patients on life support who have been declared dead by neurologic criteria. The guidelines will be developed by an ethics consensus panel comprised of scientists, bioethicists, and patient advocates as well as legal, medical, religious and disability experts. Seating consensus panels is a well accepted method of drafting ethics guidelines, used by the National Bioethics Advisory Committee, the National Institutes of Health and the Centers for Disease Control and Prevention.1 The meeting will be conducted over a two-day period with follow-up by conference call and email to produce a peer-reviewed publishable paper suitable for JNCI or JCO outlining the consensus ethics guidelines. The conference will be hosted by Emory University and Winship Cancer Institute at the Emory Conference Center. Participants will include the consensus panel of invited guests with Emory students, graduate and undergraduate, observing and offering input. The conference is scheduled for February 20 and 21, 2004. Topics to be covered include a review of guidelines used for research with the nearly and newly dead, a discussion of unresolved dilemmas and issues, and debating and finalizing proposals for consensus guidelines. To our knowledge, such an extensive discussion is the first of its kind. Currently, individual organizations have guidelines, but no consensus guidelines exist. 1Clayton E.W., Steinberg K.K., Khoury M.J., Thomson, E., Andrews, L., Kahn, M.J., Kopelman, L.M., Weiss, J.O., Consensus Statement: Informed Consent for Genetic Research on Stored Tissue Samples. JAMA (1995) 274:1786-1792.