Healthcare providers, researchers, and average civilians alike would agree that the future of healthcare is precision medicine. Particularly with the rise in accessibility and accuracy of genetic testing, people can learn more about their health on a molecular level than ever before. People can test for genetic disease to personalize their care, to select the most effective drugs for their individual needs, and to identify the likelihood of developing a disease in the future. Access to personalized healthcare should be made easier and more inclusive as direct-to-consumer genetic testing increases and diversifies. However, much of the structure that already introduces health disparities between racial, ethnic, and socioeconomic groups has the potential to increase those disparities as genetic testing becomes more prominent.
Genetic testing has the power to provide the consumer with a tremendous amount of information, but awareness and understanding of how to use this information has been “disseminated unevenly” (Canedo et al. 2019). Minority ethnic groups tend to be less aware that genetic testing is a tool that exists to them at all. Groups that are of lower educational status may also lack the tools to understand the information provided to them if they were to use a genetic test. Genetic testing–whether through healthcare providers or direct-to-consumer–is also a costly endeavor; not everyone can afford genetic screening anytime they have a healthcare concern. The result is that there are some groups that know how to use genetic testing and many groups that do not. As precision medicine becomes a default in our healthcare system, those who have awareness and understanding of genetic testing will receive superior care, and minority groups with fewer financial resources will be underserved comparatively–potentially more than they already are.
Direct-to-consumer testing (think companies like 23andMe or AncestryDNA) in particular raises numerous ethical concerns. One is the efficacy and accuracy of at home testing. Consumers may feel like having genetic information allows them to take action on their health concerns without a medical provider’s input, which is problematic when many at-home genetic tests are, “not scientifically validated and can give inaccurate results” (Martins et al. 2022). People who rely on genetic testing to manage their care without the input of a medical professional may see worse health outcomes, and it is probable that these people will be those with less knowledge and who have fewer resources to begin with.
Direct-to-consumer testing also raises the question of the importance of genetic privacy. Saulsberry & Terry (2013) found that one factor limiting minority participation in genetic services was a distrust of how genetic information will be used. While direct-to-consumer genetic testing companies market to people like their motivation is healthcare, their ultimate goal is to make money. When you send in a test, you are providing the company with personal data–the use of which is mostly unregulated. It is important that we consider that, “when the information is your own DNA, there really is no such thing as ‘de-identified’ data,” (Aldhous 2019). For those with limited education and/or income, the effect of direct-to-consumer genetic testing could be that these marginalized groups are taken advantage of when they sell their genetic information to a private company. Genetic privacy, genetic testing awareness, and transparency from genetic testing companies are all issues that should be improved on if we want to decrease disparities in healthcare quality as medicine moves into an increasingly personalized age.
Edited by: Olivia Ares
Graphic Designed by: Ariha Mehta
References
Aldhous, P. (2019, December 11). 10 years ago, DNA tests were the future of Medicine: now they're a social network - and a data privacy mess. Retrieved November 16, 2022, from https://www.buzzfeednews.com/article/peteraldhous/10-years-ago-dna-tests-were-the-future-of-medicine-now
Canedo, J. R., et al. (2019). Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review. Journal of Genetic Counseling, 28(3), 587-601. doi:10.1002/jgc4.1078
Martins, M. F., et al. (2022). Direct-to-consumer genetic testing: An updated systematic review of healthcare professionals’ knowledge and views, and ethical and legal concerns. European Journal of Human Genetics. doi:10.1038/s41431-022-01205-8
Saulsberry, K., & Terry, S. F. (2013). The need to build trust: A perspective on disparities in genetic testing. Genetic Testing and Molecular Biomarkers, 17(9), 647-648. doi:10.1089/gtmb.2013.1548