Research/Innovative Populations/Craft Ethical Guidelines

描述（由申请人提供）：目的是为两种不寻常人群的伦理研究制定国家共识指南：“濒临死亡”，即独立计划终止断奶的患者，以及“新近死亡”，即根据神经学标准宣布死亡的生命支持患者。 该指南将由一个伦理共识小组制定，该小组由科学家、生物伦理学家和患者倡导者以及法律的、医学、宗教和残疾专家组成。 座位共识小组是起草伦理准则的一种广为接受的方法，由国家生物伦理咨询委员会、国立卫生研究院和疾病控制和预防中心使用。 会议将持续两天，并通过电话会议和电子邮件进行后续跟进，以生成一份适合JNCI或JCO的同行评审的可重复文件，概述共识伦理指南。 会议将由埃默里大学和温希普癌症研究所在埃默里会议中心主办。 与会者将包括与埃默里大学学生，研究生和本科生邀请嘉宾的共识小组，观察和提供投入。 会议定于2004年2月20日和21日举行。 将涵盖的主题包括审查用于研究的指导方针与近和新近死亡，未解决的困境和问题的讨论，并讨论和最终确定共识指导方针的建议。 据我们所知，这样广泛的讨论是第一次。目前，个别组织有指导方针，但没有协商一致的指导方针。 1Clayton E.W.，Steinberg K.K.，Khoury M.J.，Thomson，E.，安德鲁斯湖M. J.卡恩，Kopelman，L.M.，韦斯，J.O.，共识声明：对储存的组织样本进行遗传研究的知情同意书。JAMA（1995）274：1786-1792.

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.