Beskow Laura M, Namey Emily E, Cadigan R Jean, Brazg Tracy, Crouch Julia, Henderson Gail E, Michie Marsha, Nelson Daniel K, Tabor Holly K, Wilfond Benjamin S
Duke Institute for Genome Sciences & Policy, Duke University, Durham, NC 27708, USA.
J Empir Res Hum Res Ethics. 2011 Dec;6(4):3-20. doi: 10.1525/jer.2011.6.4.3.
Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, "information is valuable," and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.
基因型驱动的招募是研究人类基因变异的一种潜在有力方法，但也带来了伦理挑战。我们对六项进行了此类招募的研究中的研究参与者进行了深入访谈。几乎所有人都对为研究招募而再次联系的可接受性给予了肯定回应，并且基因型驱动的招募被视为科学进步的积极标志。对有关个人基因研究结果披露问题的反应各不相同。常见主题包括解释再次联系的目的、为进一步参与提供决策信息、互惠、“信息有价值”以及受益的可能性，还有对过度困扰和误解的担忧。我们的研究结果表明，如果再次联系涉及已知因素（例如，值得信赖的研究人员），那么关于额外研究的联系可能最不会引起担忧。此外，对于基因型驱动的招募，设定一个比对一般推荐的临床效用阈值更低的个人结果披露标准可能是合适的。
