Personal utility is inherent to direct-to-consumer genomic testing

Abstract

People for and against direct-to-consumer (DTC) genomic tests are arguing around two issues: first, on whether an autonomy-based account can justify the tests; second, on whether the tests bring any personal utility. Bunnik et al, in an article published in this journal, were doubtful on the latter, especially in clinically irrelevant and uninterpretable sequences, and how far this claim could go in the justification. Here we argue that personal utility is inherent to DTC genomic tests and their results. We discuss Bunnik et al's account of personal utility and identify problems in its motivation and application. We then explore concepts like utility and entertainment which suggest that DTC genomic tests bring personal utility to their consumers, both in the motivation and the content of the tests. This points to an alternative account of personal utility which entails that entertainment value alone is adequate to justify DTC genomic tests, given appropriate strategies to communicate tests results with the consumers. It supports the autonomy-based justification of the test by showing that DTC genomic test itself stands as a valuable option and facilitates meaningful choice of the people.

Open sharing of genomic data: Who does it and why?

“…Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study thus highlights that it is crucial to consider benefits, risks and developments that stretch beyond the health spectrum. Our findings support the call for a broader and multi-faceted conceptualization of genomic utility, one that pays due attention to the value users attach to being tested and to sharing data also in terms of contributing to the common good of research or seeking connection to other people and places [59]. As a consequence, such non-medical utilities, together with non-medical dis-utilities of the sort we mentioned above, should be an integral part of the ethical and regulatory debates surrounding DTC genetics and the practice of data sharing [60].…”

Moral motivation regarding dementia risk testing among affected persons in Germany and Israel

“…Clinical utility means ‘the extent to which a biomarker test will affect clinical management and improve the individual’s health’ ( 15 p. 831). In the context of direct-to-customer genomic tests, Chung and Ng 44 argue even for a very broad understanding of personal utility: if a consumer wants to be informed about her biological traits, these tests have personal utility for her because they satisfy her interest (ie, taking the tests) and her desire to know (ie, getting the results). The medical-ethical principle of beneficence, that it is to justify acts because they promote the physical or psychological well-being of a person, is accordingly linked to utility.…”

Genes wide open: Data sharing and the social gradient of genomic privacy

“…For instance, although 23andME (23andme 2018) previously offered tests on hundreds of gene variants, the Food and Drug Administration (FDA) first warned the company to cease offering such services, and then cleared it to market only 10 genetic tests revealing reliable, clinical-grade information about the risk of developing diseases (Curnutte 2017). Yet some scholars argue that DTC-GT offers important opportunities to exercise personal choice, cultivate autonomy, or attain other personal objectives (Chung and Ng 2016;Roberts et al 2017;Vayena 2014).…”