Abstract Summary
Sarah Wieten (Stanford University) - The popularity of direct-to-consumer genetic testing is on the rise. The largest and most visible of these companies, 23andMe, had been providing not only “ancestry” targeted testing, but “health” related testing with FDA approval since March 2018. In this talk I argue that there are linked epistemological and ethical issues with the method and content of the 23andMe-style direct-to-consumer genetic testing. I will focus on the case study of the development of 23andMe testing for BRCA1 and BRCA2 genes as indicating risk of breast cancer. These linked epistemic and ethical issues are pervasive and, in some cases, are beyond the scope of issues anticipated by the Bioethics Commission in 2013. For example, 23andMe is careful to say that their testing isn’t substantial medical screening, but consumers seem to treat it as if it is, making health decisions on the basis of incomplete information. Companies like 23and Me and their customers both seem to be operating under the impression that more knowledge is always better, while examples from pervious screening efforts suggest this need not be the case. Lastly, the high rate of false positives reported in 23andMe testing suggests an undefended asymmetry in the risk associated with Type I and Type II errors, with all the ethical difficulties that asymmetry has brought in other settings. While other “direct to consumer” companies have attempted to resolve this entanglement of epistemic and normative issues by suggesting that consumers “talk to their doctor,” individual clinician explanation is unlikely to solve this issue in the case of direct-to-consumer-genetic testing, given that many general practitioners are not trained to interpret the information provided by these tests.
