Beskow Laura M, Namey Emily E, Miller Patrick R, Nelson Daniel K, Cooper Alexandra
Duke Institute for Genome Sciences and Policy, Duke University, Durham, NC, USA.
IRB. 2012 May-Jun;34(3):1-10.
Recruiting research participants based on genetic information generated about them in a prior study is a potentially powerful way to study the functional significance of human genetic variation, but also presents ethical challenges. To inform policy development on this issue, we conducted a survey of U.S. institutional review board chairs concerning the acceptability of recontacting genetic research participants about additional research and their views on the disclosure of individual genetic results as part of recruitment. Our findings suggest there is unlikely to be a “one-size-fits-all” solution, but rather several ethically acceptable approaches to genotype-driven recruitment depending on context. Disclosures made during the consent process for the original study and the clinical validity of the results are key considerations. Researchers must be prepared to communicate and answer questions in clear, lay language about what is known and not known about the role of genetics in their proposed area of research.
基于先前研究中生成的关于研究参与者的基因信息来招募研究参与者，是研究人类基因变异功能意义的一种潜在有效方式，但也带来了伦理挑战。为了为该问题的政策制定提供参考，我们对美国机构审查委员会主席进行了一项调查，内容涉及再次联系基因研究参与者进行额外研究的可接受性，以及他们对将个体基因结果披露作为招募一部分的看法。我们的研究结果表明，不太可能有“一刀切”的解决方案，而是根据具体情况有几种符合伦理的基因驱动招募方法。在原始研究的同意过程中所做的披露以及结果的临床有效性是关键考虑因素。研究人员必须准备好用清晰易懂的语言来沟通并回答问题，内容包括在他们提议的研究领域中，关于基因作用已知和未知的情况。
