Abstract
In this paper, I provide an epistemic evaluation of the harms that result from the widespread marketing of direct-to-consumer (DTC) genetic tests. While genetic tests are a valuable accessory diagnostic tool when ordered by a medical practitioner, there are different implications when they are sold directly to consumers. I aim to show that there are both epistemic and non-epistemic harms associated with the widespread commoditization of DTC genetic tests. I argue that the epistemic harms produced by DTC genetic tests have been disregarded in discussions on the topic. Drawing on the notion of contributory epistemic injustices, I highlight two pertinent epistemic harms: (1) a failure to uptake an individual’s articulations about their identity and (2) the presiding reductionist framework dismisses useful hermeneutical resources. I then propose ways to mitigate these harms.
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Notes
In this paper I start by outlining some problems found in health-related tests and then focus on ancestry tests. This is because ancestry testing is, historically, bound with the emergence of health-related tests. It is though important to note that health tests are regulated by the FDA, while ancestry tests are not. Consequently, requirements for accuracy and risk predictions in health-related tests are subject to tighter regulatory controls than in ancestry tests. This suggests that more rigorous scrutiny of both ancestry and health tests will have an impact on their reliability and trustworthiness. Also, ancestry tests and health-related tests differ in the kind of information they provide. Health-related tests provide a risk score, while ancestry tests provide information about similarities between an individual and other samples in a reference database. The problems of bias, accuracy, and reproducibility that I will highlight in this paper apply to both kinds of tests.
An example can be found on this page from 23andMe’s website: https://www.23andme.com/en-ca/ancestry-composition-guide/#:~:text=Your%20Ancestry%20Composition%20report%20shows,14%2C000%20people%20with%20known%20ancestry.
While such harms are epistemic, it is also possible to interpret them as a threat to autonomy. Test results and deceitful rhetoric can alter one’s capacity to be one’s own person, that is, to independently pursue goals that are not distorted or manipulated by external factors. Here, I am concerned with how such threats to autonomy also threaten the consumer’s position as a knowledge-seeker (assuming that most consumers are curious about their genetic history). This is why I am focusing on epistemic harms (even if they can overlap with threats to autonomy).
The consumer may then be unwittingly irresponsible for placing their trust in the knowledge provider.
The imprecision of ‘genetic ancestry’ as a scientific concept has recently been discussed in a report on the use of population descriptors produced by the Committee on the Use of Race, Ethnicity and Ancestry as Population Descriptors in Genomics Research, organized by the National Academy of Sciences (2023).
Nordgren and Juengst (2009) show the use of ‘genetic essentialism’ on behalf of DTC genetic testing companies as key to understanding their appeal to consumers.
In a 2016 television commercial, 23andMe marketed its tests using consumer testimonials from those seeking to understand “who they are” (23andMe 2016).
An ancestral criterion can be understood as the classification of an individual into a group based on ancestry.
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Haddad, Y. The epistemic harms of direct-to-consumer genetic tests. Med Health Care and Philos 26, 559–571 (2023). https://doi.org/10.1007/s11019-023-10164-w
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DOI: https://doi.org/10.1007/s11019-023-10164-w