Abstract
Direct-to-consumer genetic testing (DTC GT) diagnostic tools do not entail referral through a healthcare provider and are used by consumers to screen for genetic health risk, pharmacogenomics, and predisposition to certain diseases and to learn more about ancestry. The purpose of this study was to describe the content of DTC DNA online news articles – specifically to characterize how rising concerns related to consumer privacy, medical advancements, and bioethics are covered in online news as access to these testing kits continues to grow. One hundred news articles identified on Google News using the search term “direct to consumer DNA testing” were coded for pre-determined content categories. Only 34.0% of news articles were created by healthcare professionals. Only 10.0% of online news articles mentioned testing confidentiality and privacy protection. Articles that mentioned > 5 commercial DTC DNA products more often discussed how DTC DNA testing provides personalized information about health and link to family disease risk and other traits (85.7% vs. 61.1%, p = 0.02), can lead to the location of family members or ancestors (78.6% vs. 55.63%, p = 0.03), and that the testing results housed in DNA databases can be utilized by law enforcement to track suspects or their relatives (32.1% vs. 9.7%, p = 0.01). Articles that mentioned ≤ 5 commercial DTC DNA products failed to mention that there exists a potential for data breaches (75.0% vs. 53.6%, p = 0.04). Online news articles should adequately inform consumers regarding the benefits and risks of DTC GT tests to facilitate informed decision-making.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Abernethy A, Adams L, Barrett M, Bechtel C, Brennan P, Butte A, Faulkner J, Fontaine E, Friedhoff S, Halamka J, Howell M, Johnson K, Lee P, Long P, McGraw D, Miller R, Perlin J, Rucker D, Sandy L, Savage L, Stump L, Tang P, Topol E, Tuckson R, Valdes K (2022) The promise of digital health: then, now, and the future. NAM Perspectives. Discussion Paper, National Academy of Medicine, Washington, DC. https://doi.org/10.31478/202206e
Amendola LM, Golden-Grant K, Scollon S (2021) Scaling genetic counseling in the genomics era. Annu Rev Genomics Hum Genet 22:339–355. https://doi.org/10.1146/annurev-genom-110320-121752
Basch CH, Hillyer GC, Wahrman MZ, Garcia P, Basch CE (2021a) DNA testing information on YouTube: Inadequate advice can mislead and harm the public. J Genet Couns 30(3):785–792. https://doi.org/10.1002/jgc4.1375
Basch CH, Fera J, Quinones N (2021b) A content analysis of direct-to-consumer DNA testing on TikTok. J Community Genet 12(3):489–492. https://doi.org/10.1007/s12687-021-00526-3
Berkman BE, Miller WK, Grady C (2018) Is it ethical to use genealogy data to solve crimes? Ann Intern Med 169:333–334. https://doi.org/10.7326/M18-1348
Brown TR (2019) Why we fear genetics informants: using genetic geneology to catch serial killers. Columbia Sci Technol Law Rev 21:114–181
Businesswire (2021) Global direct-to-consumer (DTC) genetic testing market research report 2021: ancestry & relationship to account for $960 million of the total $2.3 billion – forecast to 2027 – https://www.ResearchAndMarkets.com. https://www.businesswire.com/news/home/20210713005608/en/Global-Direct-to-Consumer-DTC-Genetic-Testing-Market-Research-Report-2021-Ancestry-Relationship-to-Account-for-960-Million-of-the-Total-2.3-Billion---Forecast-to-2027---ResearchAndMarkets.com. Accessed 4 Aug 2022
Consumer Federation of America (2020) Questions and answers about direct-to-consumer genetic testing. In: Consumer Federation of America. https://consumerfed.org/consumer_info/questions-and-answers-about-direct-to-consumer-genetic-testing/. Accessed 4 Aug 2022
Copeland L (2020) The lost family: how DNA testing is upending who we are. Abrams Press, New York
Desai NV, Barrows ED, Nielsen SM et al (2021) Limitations of direct-to-consumer (DTC) genetic testing for hereditary breast and ovarian cancer. JCO 39:10515–10515. https://doi.org/10.1200/JCO.2021.39.15_suppl.10515
Greely HT (2020) The future of DTC genomics and the law. J Law Med Ethics 48:151–160. https://doi.org/10.1177/1073110520917003
Guerrini CJ, Robinson JO, Petersen D, McGuire AL (2018) Should police have access to genetic genealogy databases? Capturing the Golden State Killer and other criminals using a controversial new forensic technique. PLoS Biol 16(10):e2006906. https://doi.org/10.1371/journal.pbio.2006906
Harris A, Kelly SE, Wyatt S (2013) Counseling customers: emerging roles for genetic counselors in the direct-to-consumer genetic testing market. J Genet Couns 22:277–288. https://doi.org/10.1007/s10897-012-9548-0
Hsieh V, Braid T, Gordon E, Hercher L (2021) Direct-to-consumer genetic testing companies tell their customers to ‘see a genetic counselor’. How do genetic counselors feel about direct-to-consumer genetic testing? J Genet Couns 30:191–197. https://doi.org/10.1002/jgc4.1310
Kennett D (2019) Using genetic genealogy databases in missing persons cases and to develop suspect leads in violent crimes. Forensic Sci Int 301:107–117. https://doi.org/10.1016/j.forsciint.2019.05.016
Laestadius LI, Rich JR, Auer PL (2017) All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms. Genet Med 19:513–520. https://doi.org/10.1038/gim.2016.136
Levine DM, Linder JA, Landon BE (2020) Characteristics of Americans with primary care and changes over time, 2002–2015. JAMA Intern Med 180(3):463–466. https://doi.org/10.1001/jamainternmed.2019.6282
National Library of Medicine How much does direct-to-consumer genetic testing cost, and is it covered by health insurance?: MedlinePlus Genetics. https://medlineplus.gov/genetics/understanding/dtcgenetictesting/dtccost/. Accessed 4 Aug 2022
Mackley M (2019) DNA tests make fun holiday gifts, but beware of the hype. In: Dalhousie News. https://www.dal.ca/news/2019/12/17/dna-tests-make-fun-holiday-gifts--but-beware-of-the-hype.html. Accessed 4 Aug 2022
Majumder MA, Guerrini CJ, McGuire AL (2021) Direct-to-consumer genetic testing: value and risk. Annu Rev Med 72:151–166. https://doi.org/10.1146/annurev-med-070119-114727
McLeod AK (2021) Sales, acquisitions, and mergers of direct-to-consumer genetic testing companies. Texas A&M Law Rev 8:403–421. https://doi.org/10.37419/lr.v8.i2.5
Mendoza-Herrera K, Valero-Morales I, Ocampo-Granados ME, Reyes-Morales H, Arce-Amaré F, Barquera S (2020) An overview of social media use in the field of public health nutrition: benefits, scope, limitations, and a Latin American experience. Prev Chronic Dis 17:200047. https://doi.org/10.5888/pcd17.200047
Molteni M (2018) So much genetic testing. So few people to explain it to you. In: Wired. https://www.wired.com/story/so-much-genetic-testing-so-few-people-to-explain-it-to-you/. Accessed 4 Aug 2022
Phillips AM (2016) Only a click away – DTC genetics for ancestry, health, love…and more: a view of the business and regulatory landscape. Appl Transl Genomics 8:16–22. https://doi.org/10.1016/j.atg.2016.01.001
Prince AER, Uhlmann WR, Suter SM, Scherer AM (2021) Genetic testing and insurance implications: surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA). Winter 2021 24:341–365
Raven K (2018) Is an at-home DNA test an ideal gift, really? In: Yale Medicine. https://www.yalemedicine.org/news/at-home-genetic-test-kit-holiday-gift. Accessed 4 Aug 2022
Regalado A (2018) 2017 was the year consumer DNA testing blew up. In: MIT Technology Review. https://www.technologyreview.com/2018/02/12/145676/2017-was-the-year-consumer-dna-testing-blew-up/. Accessed 4 Aug 2022
Roberts C (2022) The privacy problems of direct-to-consumer genetic testing. In: Consumer Reports. https://www.consumerreports.org/dna-test-kits/privacy-and-direct-to-consumer-genetic-testing-dna-test-kits-a1187212155/. Accessed 4 Aug 2022
Roberts JS, Ostergren J (2013) Direct-to-consumer genetic testing and personal genomics services: a review of recent empirical studies. Curr Genet Med Rep 1:182–200
Royal CD, Novembre J, Fullerton SM et al (2010) Inferring genetic ancestry: opportunities, challenges, and implications. Am J Human Genet 86:661–673. https://doi.org/10.1016/j.ajhg.2010.03.011
Ruhl GL, Hazel JW, Clayton EW, Malin BA (2020) Public attitudes toward direct to consumer genetic testing. AMIA Annu Symp Proc 2019:774–783
Sanghavi K, Cohn B, Prince AER et al (2022) Voluntary workplace genomic testing: wellness benefit or Pandora’s box? npj Genom Med 7:5. https://doi.org/10.1038/s41525-021-00276-8
Shapiro D (2020) Inheritance: a memoir of genealogy, paternity, and love. Alfred A. Knopf, New York
Skeva S, Larmuseau MH, Shabani M (2020) Review of policies of companies and databases regarding access to customers’ genealogy data for law enforcement purposes. Pers Med 17:141–153. https://doi.org/10.2217/pme-2019-0100
Soo-Jin Lee S, Borgelt E (2014) Protecting posted genes: social networking and the limits of GINA. Am J Bioeth 14:32–44. https://doi.org/10.1080/15265161.2014.957417
Suter SM (2019) GINA at 10 years: the battle over ‘genetic information’ continues in court. J Law Biosci 5:495–526. https://doi.org/10.1093/jlb/lsz002
Tandy-Connor S, Guiltinan J, Krempely K et al (2018) False-positive results released by direct-to-consumer genetic tests highlight the importance of clinical confirmation testing for appropriate patient care. Genet Med 20:1515–1521. https://doi.org/10.1038/gim.2018.38
United States Food & Drug Administration (2019) Direct-to-consumer tests. In: FDA. https://www.fda.gov/medical-devices/in-vitro-diagnostics/direct-consumer-tests. Accessed 4 Aug 2022
United States Government Accountability Office (2020) Genetic Services: information on genetic counselor and medical geneticist workforces. https://www.gao.gov/products/gao-20-593. Accessed 27 Jul 2022
Vinopal C. (2020) Dani Shapiro on how a DNA test ‘flooded every corner’ with truth- and shaped her writing. https://www.pbs.org/newshour/arts/dani-shapiro-on-how-a-dna-test-flooded-every-corner-with-truth-and-shaped-her-writing Accessed 5 Aug 2022
Wallace-Brewster D (2021) Council post: now is the time to button up your direct-to-consumer brand data security. Forbes Magazine. https://www.forbes.com/sites/forbescommunicationscouncil/2021/10/13/now-is-the-time-to-button-up-your-direct-to-consumer-brand-data-security/?sh=1f6379fa2ad1. Accessed 4 August 2022
Whittaker Z (2020) GED Match confirms data breach after users’ DNA profile data made available to police. TechCrunch. https://techcrunch.com/2020/07/22/gedmatch-investigating-dna-profile-law-enforcement/. Accessed 4 August 2022
Yin Z, Song L, Clayton EW, Malin BA (2020) Health and kinship matter: learning about direct-to-consumer genetic testing user experiences via online discussions. PLoS One 15:e0238644. https://doi.org/10.1371/journal.pone.0238644
Zhang S (2018) When a DNA test shatters your identity. The Atlantic. https://www.theatlantic.com/science/archive/2018/07/dna-test-misattributed-paternity/562928/. Accessed 3 August 2022
Author information
Authors and Affiliations
Contributions
CHB, LS, and BC conceptualized the study. GCH completed the data analysis, while ED completed the data collection. All authors contributed to writing and revising the manuscript.
Corresponding author
Ethics declarations
Competing interests
The authors declare no competing interests.
Ethics approval
This article does not contain any studies with human or animal subjects performed by any of the authors.
Conflict of interest
Corey Basch, Grace Hillyer, Lalitha Samuel, Erela Datuowei, and Betty Cohn declare no competing interests.
Additional information
Publisher's note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Basch, C.H., Hillyer, G.C., Samuel, L. et al. Direct-to-consumer genetic testing in the news: a descriptive analysis. J Community Genet 14, 63–69 (2023). https://doi.org/10.1007/s12687-022-00613-z
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12687-022-00613-z