Toward Consensus on Benefit Sharing in Genetics Research

描述(由申请者提供)：患者团体正变得更加积极地宣传和 促进临床前和临床研究。虽然患者团体长期以来在 参与研究的各个团体已经或正在建立资助研究的基金会， 汇编特定疾病的患者登记和系谱和医学数据库，并建立组织和DNA库，为遗传学研究提供至关重要的资源。参与这些倡议的个人及其家人往往直接参与研究。这一不断发展的作用与生物医学研究的另外两个重大变化同时发生：技术转让的产生和快速发展，以及生物技术科学和投资的爆炸性增长。与科学家的密切合作关系极大地促进了有针对性的研究，因为它提供了进入受影响社区的途径，在从这些社区确定和招募潜在参与者方面提供了高度积极的帮助，为研究人员提供了能够增加信任和参与的可信度，并分担了招募费用。但受试者之间的关系和参与也提高了分享研究财务成果的公平要求。拟议的会议将 汇集众多对遗传学研究感兴趣的支持者，包括患者和疾病倡导团体、基金会、美国国立卫生研究院、研究人员、大学、制药公司和生物技术公司，并带来知识产权法、经济学和卫生政策方面的学科专业知识。目标不是寻求共识，而是确定关键问题并提出想法，以最大限度地满足有关各方的利益和需求。

DESCRIPTION (provided by applicant): Patient groups are becoming more active in promoting and facilitating pre-clinical and clinical research. While patient groups have long played a key role in participating in research, various groups have or are starting foundations for funding research, compiling disease-specific patient registries and genealogical and medical databases, and establishing tissue and DNA banks to provide resources crucial for genetics research. Individuals involved in these initiatives and their families often participate directly in research. This developing role has occurred concurrently with two other significant changes in biomedical research: the creation and rapid evolution of technology transfer and the explosion in biotechnology science and investment. The close collaborative relationships with scientists greatly facilitate targeted research by providing access to affected communities, giving highly motivated assistance in identifying and soliciting potential participants from these communities, lending credibility to the researchers that can increase trust and participation, and sharing the costs of recruitment. But the relationship and involvement of the subjects also raises equitable claims to share in the financial fruits of research. The proposed conference will bring together numerous constituencies interested in genetics research, including patient and disease advocacy groups, foundations, the NIH, researchers, universities, pharmaceutical companies, and biotechnology firms, as well as bring disciplinary expertise in intellectual property law, economics, and health policy. The goal is not to find consensus, but to identify key issues and generate ideas to best satisfy the interests and needs of all involved parties.