Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies

摘要

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.