Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA.
Genet Med. 2012 Apr;14(4):451-7. doi: 10.1038/gim.2011.66. Epub 2012 Mar 8.
People are interested in receiving their individual research results in exchange for participating in genetic research. However, it is unclear whether the public understands the nature and limitations of these results and whether they would want information with unknown clinical utility.
We conducted 10 focus groups in three US cities to examine the types of results people would want and the perceived value of different types of individual research results.
Nearly all focus group participants said they would want at least some individual research results returned. Priority was placed on results that are well understood. Less important to participants were the magnitude of the risk conferred and actionability of the result. In addition to helping treat or prevent disease, participants identified several other potential health-related and personal reasons for wanting individual research results. Many believed that researchers have an obligation to return individual research results. Although most people would prefer to receive as much information as possible, many would accept the return of a limited set of results.
Participants understood the nuances and limitations of individual research results. Researchers deciding the value of returning a given result should consider using a broader definition of clinical utility as well as the possible personal utility of the information.
人们有兴趣收到他们的个人研究结果，以换取参与基因研究。然而，目前尚不清楚公众是否了解这些结果的性质和局限性，以及他们是否希望获得具有未知临床效用的信息。
我们在美国三个城市进行了 10 个焦点小组，以研究人们希望获得的结果类型以及不同类型的个人研究结果的感知价值。
几乎所有焦点小组的参与者都表示，他们至少希望获得一些个人研究结果。优先级放在了理解程度较高的结果上。对参与者来说，结果所带来的风险程度和可操作性则不那么重要。除了帮助治疗或预防疾病外，参与者还确定了其他一些与健康相关的个人原因，希望获得个人研究结果。许多人认为研究人员有义务返还个人研究结果。尽管大多数人希望尽可能多地获得信息，但许多人会接受返还有限数量的结果。
参与者理解个人研究结果的细微差别和局限性。决定返还特定结果价值的研究人员应考虑使用更广泛的临床效用定义，以及信息可能具有的个人效用。
