Research/Innovative Populations/Craft Ethical Guidelines

描述（由申请人提供）：目标是为两种不同寻常的人群制定全国共识的伦理研究指南：“即将死亡”的患者，即那些独立计划终止断奶的患者，以及“新死亡”的患者，即依靠生命维持系统已被神经学标准宣布死亡的患者。该指南将由一个伦理共识小组制定，该小组由科学家、生物伦理学家、患者权益倡导者以及法律、医学、宗教和残疾专家组成。由协商一致的小组组成是一种广为接受的起草伦理准则的方法，被国家生物伦理咨询委员会、国家卫生研究院和疾病控制与预防中心所采用

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.