Clayton Ellen Wright
Center for Biomedical Ethics and Society, Vanderbilt University, TN, USA.
J Law Med Ethics. 2008 Summer;36(2):286-91, 212. doi: 10.1111/j.1748-720X.2008.00271.x.
Despite calls by some commentators for disclosing incidental findings in genetics research, several factors weigh in favor of caution. The technology of genetics has the power to uncover a vast array of information. The most potent argument for restraint in disclosure is that much research is pursued without consent so that the individual participant may not know that research is being conducted at all. Often the work is done by investigators and at institutions with which the person has no prior contact. Past practice is also relevant; genetics researchers historically have chosen not to disclose incidental findings, of which misattributed paternity and pleiotropic alleles such as ApoE have been the most common. Many people choose not to have genetic tests when given a choice. It may be desirable to discuss the topic of incidental findings when consent for research is obtained, but given the risk of unwanted surprise when there has been no prior discussion, the potential utility of incidental findings should be very high before they are even offered to individuals.
尽管一些评论家呼吁在基因研究中披露偶然发现,但有几个因素支持谨慎行事。基因技术有能力揭示大量信息。反对披露偶然发现的最有力论据是,许多研究是在未经同意的情况下进行的,以至于个体参与者可能根本不知道研究正在进行。这项工作通常由调查人员在与该人之前没有联系的机构进行。过去的做法也很重要;从历史上看,基因研究人员选择不披露偶然发现,其中最常见的是错误认定的亲子关系和多效性等位基因,如载脂蛋白E。很多人在有选择的情况下会选择不进行基因检测。在获得研究同意时讨论偶然发现的话题可能是可取的,但考虑到在没有事先讨论的情况下出现意外的风险,在向个人提供偶然发现之前,其潜在效用应该非常高。