Namey Emily E, Beskow Laura M
Duke Institute for Genome Sciences & Policy, Duke University, Durham, NC 27710, USa. enamey@ gmail.com
J Empir Res Hum Res Ethics. 2011 Dec;6(4):21-9. doi: 10.1525/jer.2011.6.4.21.
Better understanding of how research participants with a known condition ascribe meaning to individual genetic results is important to help researchers and institutional review boards evaluate the potential benefits and harms of disclosing results in the context of genotype-driven research recruitment. Based on 29 in-depth interviews with epilepsy patients participating in a genetic study, we found that this population of research subjects anticipated that genetic research results would provide answers to a range of questions about the research process and their condition. Their multi-layered interpretations underscore the need for clear communication about the nature and limitations of results if individual or aggregate genetic results are returned in the process of recruitment for additional research.
更好地理解患有已知疾病的研究参与者如何赋予个体基因结果以意义，对于帮助研究人员和机构审查委员会评估在基因型驱动的研究招募背景下披露结果的潜在益处和危害至关重要。基于对参与一项基因研究的癫痫患者进行的29次深入访谈，我们发现这群研究对象预计基因研究结果将为一系列有关研究过程及其病情的问题提供答案。他们的多层次解读强调，如果在招募更多研究对象的过程中返回个体或汇总的基因结果，就需要就结果的性质和局限性进行清晰的沟通。
