Nordgren Anders
Centre for Applied Ethics, Linköping University, 58183, Linköping, Sweden,
J Community Genet. 2014 Jan;5(1):59-68. doi: 10.1007/s12687-012-0094-0. Epub 2012 Apr 5.
In this paper, I investigate ethical and policy aspects of the genetic services and web-rhetoric of companies offering genetic information direct to consumer, and I do so with a special focus on genetic risk information. On their websites, the companies stress that genetic risk testing for multifactorial complex medical conditions such as cardiovascular disease and cancer may empower the consumer and provide valuable input to personal identity. Critics maintain, on the other hand, that testing can be psychologically harmful, is of limited clinical and preventive value, and vulnerable to misinterpretation. I stress the importance of empirical studies in assessing the pros and cons of direct-to-consumer testing and point out that recent empirical studies indicate that this testing is neither as harmful as feared by critics nor as empowering as promised by the companies. However, the testing is not entirely harmless. Remaining problems include testing of third parties without consent and ownership of genotypic and phenotypic information. Moreover, the testing, although not particularly empowering, may still provide input to self-understanding that some people find valuable. Regarding policy-making, I suggest that self-regulation in terms of best practice guidelines may play an important role, but I also stress that national and international regulation may be necessary.
在本文中,我研究了直接向消费者提供基因信息的公司的基因服务和网络宣传中的伦理及政策问题,尤其关注基因风险信息。在其网站上,这些公司强调,针对心血管疾病和癌症等多因素复杂病症进行基因风险检测,可能会赋予消费者权力,并为个人身份提供有价值的信息。另一方面,批评者认为,检测可能会对心理造成伤害,临床和预防价值有限,且容易被误解。我强调实证研究在评估直接面向消费者检测的利弊方面的重要性,并指出最近的实证研究表明,这种检测既不像批评者担心的那样有害,也不像公司承诺的那样具有赋权作用。然而,这种检测并非完全无害。遗留的问题包括未经同意对第三方进行检测以及基因和表型信息的所有权问题。此外,这种检测虽然没有特别强的赋权作用,但仍可能为一些人认为有价值的自我认知提供信息。关于政策制定,我认为按照最佳实践指南进行自我监管可能会发挥重要作用,但我也强调国家和国际监管可能是必要的。