151
Views
0
CrossRef citations to date
0
Altmetric
Research Article

The Landscape of Direct-To-Consumer Genetic Testing in Reproductive Health Contexts: An Analytical Framework of Stakeholders and Their Competing Motivations

ORCID Icon, ORCID Icon &

References

  • 23andMe. (2018, March 6). A major milestone in consumer health empowerment. https://blog.23andme.com/health-traits/consumer-empowerment/
  • Abercrombie, N., & Louie, D. M. (2014, March 19). Attorney general files suit against manufacturers and distributors of the prescription drug Plavix. Department of the Attorney General. https://ag.hawaii.gov/wp-content/uploads/2014/01/News-Release-2014-09.pdf
  • ACMG Board of Directors. (2021). Direct-to-consumer prenatal testing for multigenic or polygenic disorders: A position statement of the American College of Medical Genetics and Genomics (ACMG). Genetics in Medicine, 23(11), 2027–2028. https://doi.org/10.1038/s41436-021-01247-1
  • Amani, B., & Coombe, R. J. (2005). The human genome diversity project: The politics of patents at the intersection of race, religion, and research ethics. Law & Policy, 27(1), 152–188. https://doi.org/10.1111/j.1467-9930.2004.00195.x
  • Annas, G. J., & Elias, S. (2014). 23andMe and the FDA. New England Journal of Medicine, 370(11), 985–988. https://doi.org/10.1056/NEJMp1316367
  • Arcabascio, C. (2019). A genetic surveillance state: Are we one buccal swab away from a total loss of genetic privacy? Howard Law Journal, 63(2), 117–152.
  • Arribas-Ayllon, M., & Sarangi, S. (2014). Counselling uncertainty: Genetics professionals’ accounts of (non)directiveness and trust/distrust. Health, Risk & Society, 16(2), 171–184. https://doi.org/10.1080/13698575.2014.884545
  • Au, L. (2022). Testing the talented child: Direct-to-consumer genetic talent tests in China. Public Understanding of Science, 31(2), 195–210. https://doi.org/10.1177/09636625211051964
  • Baptista, N. M., Christensen, K. D., Carere, D. A., Broadley, S. A., Roberts, J. S., & Green, R. C. (2016). Adopting genetics: Motivations and outcomes of personal genomic testing in adult adoptees. Genetics in Medicine, 18(9), 924–932. https://doi.org/10.1038/gim.2015.192
  • Baxter, L. A., Scharp, K. M., & Thomas, L. J. (2021). Relational dialectics theory. Journal of Family Theory & Review, 13(1), 7–20. https://doi.org/10.1111/jftr.12405
  • Bélisle-Pipon, J.-C., Vayena, E., Green, R. C., & Cohen, I. G. (2019). Genetic testing, insurance discrimination and medical research: What the United States can learn from peer countries. Nature Medicine, 25(8), 1198–1204. https://doi.org/10.1038/s41591-019-0534-z
  • Booth, A., Papaioannou, D., & Sutton, A. (2011). Systematic approaches to a successful literature review. Sage.
  • Bottorff, J. L., Ratner, P. A., Johnson, J. L., Lovato, C. Y., & Joab, S. A. (1998). Communicating cancer risk information: The challenges of uncertainty. Patient Education and Counseling, 33(1), 67–81. https://doi.org/10.1016/S0738-3991(97)00047-5
  • Brothers, K. B., & Knapp, E. E. (2018). How should primary care physicians respond to direct-to-consumer genetic test results? AMA Journal of Ethics, 20(9), E812–818. https://doi.org/10.1001/amajethics.2018.812
  • Camporesi, S., & McNamee, M. J. (2013). Is there a role for genetic testing in sports? In D. N. Cooper (Ed.), Encyclopedia of life sciences. Wiley. https://doi.org/10.1002/9780470015902.a0024203
  • Camporesi, S., & McNamee, M. J. (2016). Ethics, genetic testing, and athletic talent: Children’s best interests, and the right to an open (athletic) future. Physiological Genomics, 48(3), 191–195. https://doi.org/10.1152/physiolgenomics.00104.2015
  • Carroll, N. M., Blum-Barnett, E., Madrid, S. D., Jonas, C., Janes, K., Alvarado, M., Bedoy, R., Paolino, V., Aziz, N., McGlynn, E. A., & Burnett-Hartman, A. N. (2020). Demographic differences in the utilization of clinical and direct-to-consumer genetic testing. Journal of Genetic Counseling, 29(4), 634–643. https://doi.org/10.1002/jgc4.1193
  • Cavaliere, G. (2018). Looking into the shadow: The eugenics argument in debates on reproductive technologies and practices. Monash Bioethics Review, 36(1), 1–22. https://doi.org/10.1007/s40592-018-0086-x
  • Charmaz, K. (2014). Constructing grounded theory: A practical guide through qualitative analysis (2nd ed.). Sage.
  • Chung, M. W. H., & Ng, J. C. F. (2016). Personal utility is inherent to direct-to-consumer genomic testing. Journal of Medical Ethics, 42(10), 649–652. https://doi.org/10.1136/medethics-2015-103057
  • Collins, J. A., & Fauser, B. C. J. M. (2005). Balancing the strengths of systematic and narrative reviews. Human Reproduction Update, 11(2), 103–04. https://doi.org/10.1093/humupd/dmh058
  • Crouch, J., Yu, J.-H., Shankar, A. G., & Tabor, H. K. (2015). “We don’t know her history, her background”: Adoptive parents’ perspectives on whole genome sequencing results. Journal of Genetic Counseling, 24(1), 67–77. https://doi.org/10.1007/s10897-014-9738-z
  • Dar-Nimrod, I., & Heine, S. J. (2011). Genetic essentialism: On the deceptive determinism of DNA. Psychological Bulletin, 137(5), 800–818. https://doi.org/10.1037/a0021860
  • Dawkins, R. (2014, August 21). Abortion & down syndrome: An apology for letting slip the dogs of Twitterwar. Richard Dawkins Foundation. https://richarddawkins.net/2014/08/abortion-down-syndrome-an-apology-for-letting-slip-the-dogs-of-twitterwar/
  • de Pauw, A., Schwartz, M., Colas, C., Golmard, L., & Stoppa-Lyonnet, D. (2020). Direct-to-consumer misleading information on cancer risks calls for an urgent clarification of health genetic testing performed by commercial companies. European Journal of Cancer, 132, 100–103. https://doi.org/10.1016/j.ejca.2020.03.007
  • Delacruz, M. J. (2020). “I don’t like those genes”: How modern medical marketing informs reproductive decision-making and creates harmful effects for people with disabilities. University of San Francisco Law Review, 54(3), 537–556.
  • Denny, J. (2022, March 17). A message to participants: Diverse DNA dataset to drive discoveries. National Institutes of Health. https://allofus.nih.gov/news-events/announcements/ceo-update-dna-dataset-release
  • Dougherty, D. S. (2017). Language convergence/meaning divergence theory: Creating conflict through misunderstandings. In D. O. Braithwaite, E. A. Suter & K. Floyd (Eds.), Engaging theories in family communication: Multiple perspectives (2nd ed., pp. 187–198). Routledge.
  • Feinstein, R. A. (2018). When rape was legal: The untold story of sexual violence during slavery. Routledge.
  • Flynn, M. (2019, December 13). A Harvard scientist is developing a DNA-based dating app to reduce genetic disease. Critics called it eugenics. The Washington Post. https://www.washingtonpost.com/nation/2019/12/13/genetics-george-church-dna-dating-app-reduce-disease-eugenics/
  • Fox, K. (2020). The illusion of inclusion — The “All of Us” research program and indigenous peoples’ DNA. New England Journal of Medicine, 383(5), 411–413. https://doi.org/10.1056/NEJMp1915987
  • Francis, J. G., & Francis, L. P. (2021). Sustaining surveillance: The importance of information for public health. Springer.
  • Franks, P. W., & Paré, G. (2016). Putting the genome in context: Gene-environment interactions in type 2 diabetes. Current Diabetes Reports, 16(7), Article 57. https://doi.org/10.1007/s11892-016-0758-y
  • Freeman, R. E. (1984). Strategic management: A stakeholder approach. Pitman.
  • Future Market Insights. (2023, July 10). Direct-to-consumer genetic testing market is estimated to reach US$ 4843.4 million; growing at CAGR of 11.4% by forecast 2033 end. https://finance.yahoo.com/news/direct-consumer-genetic-testing-market-163000052.html
  • Garner, S. A., & Kim, J. (2018). The privacy risks of direct-to-consumer genetic testing: A case study of 23andMe and ancestry. Washington University Law Review, 96(6), 1219–1265.
  • Garrett, J. R., Lantos, J. D., Biesecker, L. G., Childerhose, J. E., Chung, W. K., Holm, I. A., Koenig, B. A., McEwen, J. E., Wilfond, B. S., & Brothers, K. (2019). Rethinking the “open future” argument against predictive genetic testing of children. Genetics in Medicine, 21(10), 2190–2198. https://doi.org/10.1038/s41436-019-0483-4
  • Gill, M. (2015). Already doing it: Intellectual disability and sexual agency. University of Minnesota Press.
  • Global Industry Analysts. (2021, August 06). Global direct-to-consumer (DTC) genetic testing market to reach $2 billion by 2026. https://www.prnewswire.com/news-releases/global-direct-to-consumer-dtc-genetic-testing-market-to-reach-2-billion-by-2026-301349012.html
  • Global Industry Analysts. (2023). Direct-to-consumer (DTC) genetic testing: Global strategic business report. https://www.researchandmarkets.com/reports/2255350
  • Golinghorst, D. R., & Prince, A. E. R. (2020). A survey of U.S. state insurance commissioners concerning genetic testing and life insurance: Redux at 27. Journal of Genetic Counseling, 29(6), 928–935. https://doi.org/10.1002/jgc4.1197
  • Grandhi, S. A., & Plotnick, L. (2022). Do I spit or do I pass? Perceived privacy and security concerns of direct-to-consumer genetic testing. Proceedings of the ACM on Human-Computer Interaction, 6(GROUP), Article 19. https://doi.org/10.1145/3492838
  • Gregory, K. (2019). Contestable kinship: User experience and engagement on DTC genetic testing sites. New Genetics and Society, 38(4), 387–409. https://doi.org/10.1080/14636778.2019.1677148
  • Guerrini, C. J., Robinson, J. O., Petersen, D., & McGuire, A. L. (2018). Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biology, 16(10), Article e2006906. https://doi.org/10.1371/journal.pbio.2006906
  • Gyngell, C., & Douglas, T. (2018). Selecting against disability: The liberal eugenic challenge and the argument from cognitive diversity. Journal of Applied Philosophy, 35(2), 319–340. https://doi.org/10.1111/japp.12199
  • Haeusermann, T., Fadda, M., Blasimme, A., Tzovaras, B. G., & Vayena, E. (2018). Genes wide open: Data sharing and the social gradient of genomic privacy. AJOB Empirical Bioethics, 9(4), 207–221. https://doi.org/10.1080/23294515.2018.1550123
  • Haeusermann, T., Greshake, B., Blasimme, A., Irdam, D., Richards, M., Vayena, E., & Wang, K. (2017). Open sharing of genomic data: Who does it and why? PLoS One, 12(5), Article e0177158. https://doi.org/10.1371/journal.pone.0177158
  • Harmon, A. (2010, April 21). Indian tribe wins fight to limit research of its DNA. The New York Times, A1. https://www.nytimes.com/2010/04/22/us/22dna.html
  • Harper, J. C., Kennett, D., & Reisel, D. (2016). The end of donor anonymity: How genetic testing is likely to drive anonymous gamete donation out of business. Human Reproduction, 31(6), 1135–1140. https://doi.org/10.1093/humrep/dew065
  • Harris, A., Kelly, S. E., & Wyatt, S. (2014). Autobiologies on YouTube: Narratives of direct-to-consumer genetic testing. New Genetics and Society, 33(1), 60–78. https://doi.org/10.1080/14636778.2014.884456
  • Harter, L. M., Japp, P. M., & Beck, C. S. (Eds.). (2006). Narratives, health, and healing: Communication theory, research, and practice. Routledge.
  • Hazel, J. W., & Slobogin, C. (2018). Who knows what, and when: A survey of the privacy policies proffered by US direct-to-consumer genetic testing companies. Cornell Journal of Law and Public Policy, 28(1), 35–66. https://scholarship.law.cornell.edu/cjlpp/vol28/iss1/3
  • Hendricks-Sturrup, R. M., Prince, A. E., & Lu, C. Y. (2019). Direct-to-consumer genetic testing and potential loopholes in protecting consumer privacy and nondiscrimination. JAMA, 321(19), 1869–1870. https://doi.org/10.1001/jama.2019.3384
  • Hogarth, S., Javitt, G., & Melzer, D. (2008). The current landscape for direct-to-consumer genetic testing: Legal, ethical, and policy issues. Annual Review of Genomics and Human Genetics, 9(1), 161–182. https://doi.org/10.1146/annurev.genom.9.081307.164319
  • Hoglund-Shen, A. (2017). Direct-to-consumer genetic testing, gamete donation, and the law. Family Court Review, 55(3), 472–484. https://doi.org/10.1111/fcre.12288
  • Howard, H. C., Avard, D., & Borry, P. (2011). Are the kids really all right? Direct-to-consumer genetic testing in children: Are company policies clashing with professional norms? European Journal of Human Genetics, 19(11), 1122–1126. https://doi.org/10.1038/ejhg.2011.94
  • Hsieh, E., & Kramer, E. M. (2021). Rethinking culture in health communication: Social interactions as intercultural encounters. Wiley.
  • Jacobs, B., Roffenbender, J., Collmann, J., Cherry, K., Bitsói, L. L., Bassett, K., & Evans, C. H., Jr. (2010). Bridging the divide between genomic science and indigenous peoples. The Journal of Law, Medicine & Ethics, 38(3), 684–696. https://doi.org/10.1111/j.1748-720X.2010.00521.x
  • Jobling, M. A., Rasteiro, R., & Wetton, J. H. (2016). In the blood: The myth and reality of genetic markers of identity. Ethnic and Racial Studies, 39(2), 142–161. https://doi.org/10.1080/01419870.2016.1105990
  • Joly, Y., & Marrocco, G. (2020). Regulating the use of genetic testing by insurers and employers in the province of Quebec: Is the genetic non-discrimination act really necessary? In L. Khoury, A. Blackett & L. Vanhonnaeker (Eds.), Genetic testing and the governance of risk in the contemporary economy: Comparative reflections in the insurance and employment law contexts (pp. 269–292). Springer.
  • Jonas, M. C., Suwannarat, P., Burnett-Hartman, A., Carroll, N., Turner, M., Janes, K., Truong, C., Blum-Barnett, E., Aziz, N., & McGlynn, E. A. (2019). Physician experience with direct-to-consumer genetic testing in Kaiser Permanente. Journal of Personalized Medicine, 9(4), Article 47. https://doi.org/10.3390/jpm9040047
  • Kahn, J. (2014). Race in a bottle: The story of BiDil and racialized medicine in a post-genomic age. Columbia University Press.
  • Kalokairinou, L., Howard, H. C., Slokenberga, S., Fisher, E., Flatscher-Thöni, M., Hartlev, M., van Hellemondt, R., Juškevičius, J., Kapelenska-Pregowska, J., Kováč, P., Lovrečić, L., Nys, H., de Paor, A., Phillips, A., Prudil, L., Rial-Sebbag, E., Romeo Casabona, C. M., Sándor, J. … Borry, P. (2018). Legislation of direct-to-consumer genetic testing in Europe: A fragmented regulatory landscape. Journal of Community Genetics, 9(2), 117–132. https://doi.org/10.1007/s12687-017-0344-2
  • Kilbride, M. K., & Bradbury, A. R. (2020). Evaluating web-based direct-to-consumer genetic tests for cancer susceptibility. JCO Precision Oncology, 4(4), 161–169. https://ascopubs.org/doi/abs/10.1200/PO.19.00317
  • King, J. (2019). “Becoming part of something bigger”: Direct to consumer genetic testing, privacy, and personal disclosure. Proceedings of the ACM on Human-Computer Interaction, 3(CSCW), 1–33, Article 158. https://doi.org/10.1145/3359260
  • Kutz, G. (2010). Direct-to-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices ( GAO-10-847T). https://www.gao.gov/products/gao-10-847t
  • Laestadius, L. I., Rich, J. R., & Auer, P. L. (2017). All your data (effectively) belong to us: Data practices among direct-to-consumer genetic testing firms. Genetics in Medicine, 19(5), 513–520. https://doi.org/10.1038/gim.2016.136
  • Lee, H., Vogel, R. I., LeRoy, B., & Zierhut, H. A. (2021). Adult adoptees and their use of direct-to-consumer genetic testing: Searching for family, searching for health. Journal of Genetic Counseling, 30(1), 144–157. https://doi.org/10.1002/jgc4.1304
  • Lee, S. S.-J. (2015). The biobank as political artifact: The struggle over race in categorizing genetic difference. The ANNALS of the American Academy of Political and Social Science, 661(1), 143–159. https://doi.org/10.1177/0002716215591141
  • Lenartz, A., Scherer, A. M., Uhlmann, W. R., Suter, S. M., Anderson Hartley, C., & Prince, A. E. R. (2021). The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage. Genetics in Medicine, 23(12), 2324–2334. https://doi.org/10.1038/s41436-021-01268-w
  • Lewis, N. P., Treise, D., Hsu, S. I., Allen, W. L., & Kang, H. (2011). DTC genetic testing companies fail transparency prescriptions. New Genetics and Society, 30(4), 291–307. https://doi.org/10.1080/14636778.2011.600434
  • Lillie, N., Prows, C. A., McGowan, M. L., Blumling, A. A., & Myers, M. F. (2021). Experiences of adolescents and their parents after receiving adolescents’ genomic screening results. Journal of Genetic Counseling, 31(3), 608–619. https://doi.org/10.1002/jgc4.1528
  • Lock, M. (1999). Genetic diversity and the politics of difference. Chicago-Kent Law Review, 75(1), 83–111.
  • Marchant, G., & Stevens, Y. (2014, September 7). I love your genes! Slate. https://slate.com/technology/2014/09/instant-chemistry-singldout-how-online-dating-sites-use-dna-to-make-matches.html
  • Marshe, V. S., Gorbovskaya, I., Kanji, S., Kish, M., & Müller, D. J. (2019). Clinical implications of APOE genotyping for late-onset Alzheimer’s disease (LOAD) risk estimation: A review of the literature. Journal of Neural Transmission, 126(1), 65–85. https://doi.org/10.1007/s00702-018-1934-9
  • Mathews, R., Hall, W., & Adrian, C. (2012). Direct-to-consumer genetic testing for addiction susceptibility: A premature commercialisation of doubtful validity and value. Addiction, 107(12), 2069–2074. https://doi.org/10.1111/j.1360-0443.2012.03836.x
  • Matranga, C. (2020). Family ties: The familial privacy implications of direct-to-consumer genetic testing. Food and Drug Law Journal, 75(3), 456–487. https://doi.org/10.2139/ssrn.3533283
  • May, T., Strong, K. A., Khoury, M. J., & Evans, J. P. (2015). Can targeted genetic testing offer useful health information to adoptees? Genetics in Medicine, 17(7), 533–535. https://doi.org/10.1038/gim.2015.58
  • McDonald, W. S., Wagner, J. K., Deverka, P. A., Woods, L. A., Peterson, J. F., & Williams, M. S. (2020). Genetic testing and employer-sponsored wellness programs: An overview of current vendors, products, and practices. Molecular Genetics & Genomic Medicine, 8(10), e1414. https://doi.org/10.1002/mgg3.1414
  • McGrath, S. P., Coleman, J., Najjar, L., Fruhling, A., & Bastola, D. R. (2016). Comprehension and data-sharing behavior of direct-to-consumer genetic test customers. Public Health Genomics, 19(2), 116–124. https://doi.org/10.1159/000444477
  • Miller, P. S., & Levine, R. L. (2013). Avoiding genetic genocide: Understanding good intentions and eugenics in the complex dialogue between the medical and disability communities. Genetics in Medicine, 15(2), 95–102. https://doi.org/10.1038/gim.2012.102
  • Mulrow, C., & Cook, D. (1998). Systematic reviews: Synthesis of best evidence for health care decisions. American College of Physicians.
  • Murray, A. B. V., Carson, M. J., Morris, C. A., & Beckwith, J. (2010). Illusions of scientific legitimacy: Misrepresented science in the direct-to-consumer genetic-testing marketplace. Trends in Genetics, 26(11), 459–461. https://doi.org/10.1016/j.tig.2010.08.001
  • National Institutes of Health. (2022). All of us research program. https://allofus.nih.gov/
  • Natoli, J. L., Ackerman, D. L., McDermott, S., & Edwards, J. G. (2012). Prenatal diagnosis of down syndrome: A systematic review of termination rates (1995–2011). Prenatal Diagnosis, 32(2), 142–153. https://doi.org/10.1002/pd.2910
  • Nordgren, A., & Juengst, E. T. (2009). Can genomics tell me who I am? Essentialistic rhetoric in direct-to-consumer DNA testing. New Genetics and Society, 28(2), 157–172. https://doi.org/10.1080/14636770902901595
  • Novas, C., & Rose, N. (2000). Genetic risk and the birth of the somatic individual. Economy and Society, 29(4), 485–513. https://doi.org/10.1080/03085140050174750
  • Ossorio, P. N. (2007). The human genome as common heritage: Common sense or legal nonsense? The Journal of Law, Medicine & Ethics, 35(3), 425–439. https://doi.org/10.1111/j.1748-720X.2007.00165.x
  • Panofsky, A., Dasgupta, K., & Iturriaga, N. (2021). How white nationalists mobilize genetics: From genetic ancestry and human biodiversity to counterscience and metapolitics. American Journal of Physical Anthropology, 175(2), 387–398. https://doi.org/10.1002/ajpa.24150
  • Panofsky, A., & Donovan, J. (2019). Genetic ancestry testing among white nationalists: From identity repair to citizen science. Social Studies of Science, 49(5), 653–681. https://doi.org/10.1177/0306312719861434
  • Pavarini, G., Hamdi, L., Lorimer, J., & Singh, I. (2021). Young people’s moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease. European Journal of Medical Genetics, 64(6), 104180. https://doi.org/10.1016/j.ejmg.2021.104180
  • Perez, G. K., Cruess, D. G., Cruess, S., Brewer, M., Stroop, J., Schwartz, R., & Greenstein, R. (2011). Attitudes toward direct-to-consumer advertisements and online genetic testing among high-risk women participating in a hereditary cancer clinic. Journal of Health Communication, 16(6), 607–628. https://doi.org/10.1080/10810730.2011.551993
  • Phillips, A. M. (2016). Only a click away - DTC genetics for ancestry, health, love… and more: A view of the business and regulatory landscape. Applied & Translational Genetics, 8, 16–22. https://doi.org/10.1016/j.atg.2016.01.001
  • Putman, A. L., & Cole, K. L. (2020). All hail DNA: The constitutive rhetoric of AncestryDNA™ advertising. Critical Studies in Media Communication, 37(3), 207–220. https://doi.org/10.1080/15295036.2020.1767796
  • Rahman, B., Meiser, B., Sachdev, P., Barlow-Stewart, K., Otlowski, M., Zilliacus, E., & Schofield, P. (2012). To know or not to know: An update of the literature on the psychological and behavioral impact of genetic testing for Alzheimer disease risk. Genetic Testing and Molecular Biomarkers, 16(8), 935–942. https://doi.org/10.1089/gtmb.2011.0300
  • Reichertz, J. (2007). Abduction: The logic of discovery of grounded theory. In A. Bryant & K. Charmaz (Eds.), The SAGE handbook of grounded theory (pp. 214–228). Sage.
  • Resnick, B. (2019). The limits of ancestry DNA tests, explained. Vox. https://www.vox.com/science-and-health/2019/1/28/18194560/ancestry-dna-23-me-myheritage-science-explainer
  • Roberts, D. (2017). Killing the black body: Race, reproduction, and the meaning of liberty (2nd ed.). Vintage.
  • Ross, L. F., Saal, H. M., David, K. L., & Anderson, R. R. (2013). Technical report: Ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15(3), 234–245. https://doi.org/10.1038/gim.2012.176
  • Roth, W. D., & Ivemark, B. (2018). Genetic options: The impact of genetic ancestry testing on consumers’ racial and ethnic identities. American Journal of Sociology, 124(1), 150–184. https://doi.org/10.1086/697487
  • Roth, W. D., Yaylacı, Ş., Jaffe, K., Richardson, L., & Withers, M. H. (2020). Do genetic ancestry tests increase racial essentialism? Findings from a randomized controlled trial. PLoS One, 15(1), Article e0227399. https://doi.org/10.1371/journal.pone.0227399
  • Sandler, S., Alfino, L., & Saleem, M. (2018). The importance of preventative medicine in conjunction with modern day genetic studies. Genes & Diseases, 5(2), 107–111. https://doi.org/10.1016/j.gendis.2018.04.002
  • Sandroff, R. (2010). Direct-to-consumer genetic tests and the right to know. Hastings Center Report, 40(5), 24–25. https://doi.org/10.1353/hcr.2010.0014
  • Schaper, M., & Schicktanz, S. (2018). Medicine, market and communication: Ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services. BMC Medical Ethics, 19(1), Article 56. https://doi.org/10.1186/s12910-018-0292-3
  • Scher, B. (2019). ‘Pocahontas’ could still be Elizabeth Warren’s biggest vulnerability. Politico Magazine. https://www.politico.com/magazine/story/2019/08/27/pocahontas-elizabeth-warrens-biggest-vulnerability-227912
  • Schlauderaff, S. (2020). Re-imagining futurity for fat, disabled and “unhealthy” bodyminds: A response to 23andMe’s health + ancestry genetic testing kits. Fat Studies, 9(3), 238–258. https://doi.org/10.1080/21604851.2019.1651124
  • Scully, M., Brown, S. D., & King, T. (2016). Becoming a Viking: DNA testing, genetic ancestry and placeholder identity. Ethnic and Racial Studies, 39(2), 162–180. https://doi.org/10.1080/01419870.2016.1105991
  • Skirton, H. (2015). Direct to consumer testing in reproductive contexts–should health professionals be concerned? Life Sciences, Society and Policy, 11(1), Article 4. https://doi.org/10.1186/s40504-014-0018-3
  • Sleeboom-Faulkner, M. (2008). Human genetic biobanking in Asia: Issues of trust, wealth, and ambition. In M. Sleeboom-Faulkner & P. Garside (Eds.), Human genetic biobanks in Asia: Politics of trust and scientific advancement (pp. 3–24). Routledge.
  • Sterckx, S., Cockbain, J., Howard, H. C., & Borry, P. (2013). “I prefer a child with … ”: Designer babies, another controversial patent in the arena of direct-to-consumer genomics. Genetics in Medicine, 15(12), 923–924. https://doi.org/10.1038/gim.2013.164
  • Strong, K. A., May, T., McCauley, M., Pean Kirschner, A. L., Jeruzal, J., Wilson, S. L., Zusevics, K. L., & Knight, C. (2017). Adult adoptees’ attitudes regarding the potential use of genetic information to fill the gap in their family health history. Adoption & Fostering, 41(2), 159–169. https://doi.org/10.1177/0308575917704553
  • Su, Y., Borry, P., Otte, I. C., & Howard, H. C. (2013). “It’s our DNA, we deserve the right to test!” a content analysis of a petition for the right to access direct-to-consumer genetic testing. Personalized Medicine, 10(7), 729–739. https://doi.org/10.2217/pme.13.69
  • TallBear, K. (2013). Native American DNA: Tribal belonging and the false promise of genetic science. University of Minnesota Press.
  • Tamir, S. (2010). Direct-to-consumer genetic testing: Ethical–legal perspectives and practical considerations. Medical Law Review, 18(2), 213–238. https://doi.org/10.1093/medlaw/fwq011
  • Tan, C. D. (2018). “I’m a normal autistic person, not an abnormal neurotypical”: Autism spectrum disorder diagnosis as biographical illumination. Social Science & Medicine, 197, 161–167. https://doi.org/10.1016/j.socscimed.2017.12.008
  • Tandy-Connor, S., Guiltinan, J., Krempely, K., LaDuca, H., Reineke, P., Gutierrez, S., Gray, P., & Tippin Davis, B. (2018). False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genetics in Medicine, 20(12), 1515–1521. https://doi.org/10.1038/gim.2018.38
  • Tenenbaum, J. D., & Goodman, K. W. (2017). Beyond the genetic information nondiscrimination act: Ethical and economic implications of the exclusion of disability, long-term care and life insurance. Personalized Medicine, 14(2), 153–157. https://doi.org/10.2217/pme-2016-0078
  • Thiebes, S., Toussaint, P. A., Ju, J., Ahn, J.-H., Lyytinen, K., & Sunyaev, A. (2020). Valuable genomes: Taxonomy and archetypes of business models in direct-to-consumer genetic testing. Journal of Medical Internet Research, 22(1), Article e14890. https://doi.org/10.2196/14890
  • Thompson, M. (2021). Narrative mapping: Participant-generated visual methodology for health communication research and pedagogy. Health Communication, 36(5), 630–638. https://doi.org/10.1080/10410236.2020.1733228
  • Torres, J. B. (2022). Racial experience in the age of direct-to-consumer ancestry testing. Nordic Journal of Social Research, 13(1), 37–50. https://doi.org/10.18261/njsr.13.1.4
  • Turrini, M., & Prainsack, B. (2016). Beyond clinical utility: The multiple values of DTC genetics. Applied & Translational Genomics, 8, 4–8. https://doi.org/10.1016/j.atg.2016.01.008
  • Walajahi, H., Wilson, D. R., & Hull, S. C. (2019). Constructing identities: The implications of DTC ancestry testing for tribal communities. Genetics in Medicine, 21(8), 1744–1750. https://doi.org/10.1038/s41436-018-0429-2
  • Wan, Z., Hazel, J. W., Clayton, E. W., Vorobeychik, Y., Kantarcioglu, M., & Malin, B. A. (2022). Sociotechnical safeguards for genomic data privacy. Nature Reviews Genetics, 23(7), 429–445. https://doi.org/10.1038/s41576-022-00455-y
  • Wasson, K., Cook, E. D., & Helzlsouer, K. (2006). Direct-to-consumer online genetic testing and the four principles: An analysis of the ethical issues. Ethics & Medicine, 22(2), 83–91. https://www.ncbi.nlm.nih.gov/pubmed/17115513
  • Webborn, N., Williams, A., McNamee, M., Bouchard, C., Pitsiladis, Y., Ahmetov, I., Ashley, E., Byrne, N., Camporesi, S., Collins, M., Dijkstra, P., Eynon, N., Fuku, N., Garton, F. C., Hoppe, N., Holm, S., Kaye, J., Klissouras, V. … Wang, G. (2015). Direct-to-consumer genetic testing for predicting sports performance and talent identification: Consensus statement. British Journal of Sports Medicine, 49(23), 1486–1491. https://doi.org/10.1136/bjsports-2015-095343
  • Wilde, A., Meiser, B., Mitchell, P. B., & Schofield, P. R. (2010). Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings. European Journal of Human Genetics, 18(1), 47–51. https://doi.org/10.1038/ejhg.2009.138
  • Wu, S., Pollard, J., Chowdry, A., Scheller, R., & Gentleman, R. (2019). Addressing the accuracy of direct-to-consumer genetic testing. Genetics in Medicine, 21(3), 758–759. https://doi.org/10.1038/s41436-018-0094-5
  • Yang, A. (2007). Is Oprah Zulu? Sampling and seeming certainty in DNA ancestry testing. Chance, 20(1), 32–39. https://doi.org/10.1080/09332480.2007.10722830

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.