Research/Innovative Populations/Craft Ethical Guidelines

描述(由申请者提供)：目标是为两个不寻常的人群制定伦理研究的国家共识指南：“接近死亡”的患者，即独立计划为其进行末期断奶的患者，以及“新死亡”的患者，根据神经学标准已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、患者权益倡导者以及法律、医学、宗教和残疾专家组成。协商一致小组会议是起草伦理指导方针的一种被广泛接受的方法，国家生物伦理咨询委员会、国家卫生研究院和疾病控制和预防中心1使用这种方法。 会议将为期两天，后续将通过电话会议和电子邮件进行，以编写一份适合JNCI或JCO的同行评议可发表的文件，概述协商一致的道德准则。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。参与者将包括受邀嘉宾与埃默里大学研究生和本科生的共识小组，观察并提供意见。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近亲和新近去世的人的准则，讨论悬而未决的两难和问题，以及辩论和最后确定协商一致准则的提案。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.，Andrews，L.，Kahn，M.J.，Kopelman，L.M.，Weiss，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。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.