Advertisement

“I would rather have it done by a doctor”—laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications

  • Manuel Schaper
  • Sabine Wöhlke
  • Silke Schicktanz
Scientific Contribution

Abstract

Direct-to-consumer genetic testing (DTC GT) has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups (participants n = 43) with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine.

Keywords

Direct-to-consumer genetic testing Trust Laypeople Attitudes Responsibility Focus group discussion 

Notes

Acknowledgements

Special acknowledgements need to be given to Mark Schweda, Alexander Urban and Julia Perry who designed the data collection methodology together with the authors and to Alexander Urban and Julia Perry for assisting with data collection.

Author contributions

MS, SW, and SS: Designed the focus group guidelines, monitored data collection, participated in the analysis process of group consensus coding of the data and revised the paper. Additionally, MS: Coded and analyzed the data and drafted the paper, functioning as guarantor. SW: Supported analyzing the data and drafting the paper. SS: Initiated the project and drafted the paper.

Funding

This research was funded by the Swedish Riksbankens Jubileumsfond, 2015–2019 (Grant No. 1351730).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no competing interests.

Ethical approval

Ethics approval obtained from the University of Göttingen Human Research Review Committee (Ref. Nr. 16/10/14).

Supplementary material

11019_2018_9837_MOESM1_ESM.pdf (537 kb)
Supplementary material 1 (PDF 538 KB)

References

  1. 23andMe. 2017a. https://www.23andme.com/. Accessed 19 Oct 2017.
  2. 23andMe. 2017b. https://mediacenter.23andme.com/about-us/. Accessed 11 July 2017.
  3. Anderson, Emily E., and Katherine Wasson. 2015. Personal narratives of genetic testing: Expectations, emotions, and impact on self and family. Narrative Inquiry in Bioethics 5 (3): 229–235.CrossRefGoogle Scholar
  4. Arribas-Ayllon, Michael, Katie Featherstone, and Paul Atkinson. 2011. The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect. Social Theory & Health 9 (1): 3–23.  https://doi.org/10.1057/sth.2009.22.CrossRefGoogle Scholar
  5. Barbour, Rosaline. 2007. Doing focus groups. Los Angeles: Sage.CrossRefGoogle Scholar
  6. Berg, Bruce L. 2007. Qualitative research methods for the social sciences. Boston: Pearson/Allyn & Bacon.Google Scholar
  7. Bloss, Cinnamon S., Nicholas J. Schork, and Eric J. Topol. 2011. Effect of direct-to-consumer genomewide profiling to assess disease risk. New England Journal of Medicine 364 (6): 524–534.  https://doi.org/10.1056/NEJMoa1011893.CrossRefGoogle Scholar
  8. Bollinger, Juli Murphy, Robert C. Green, and David Kaufman. 2013. Attitudes about regulation among direct-to-consumer genetic testing customers. Genetic Testing and Molecular Biomarkers 17 (5): 424–428.CrossRefGoogle Scholar
  9. Bunnik, Eline M., A. Cecile Janssens, and Maartje H. Schermer. 2015. Personal utility in genomic testing: Is there such a thing? Journal of Medical Ethics 41 (4): 322–326.  https://doi.org/10.1136/medethics-2013-101887.CrossRefGoogle Scholar
  10. Cherkas, Lynn F., Juliette M. Harris, Elana Levinson, Tim D. Spector, and Barbara Prainsack. 2010. A survey of UK public interest in internet-based personal genome testing. PLoS ONE 5 (10): e13473.  https://doi.org/10.1371/journal.pone.0013473.CrossRefGoogle Scholar
  11. Chung, Matthew Wai Heng, and Joseph Chi Fung Ng. 2016. Personal utility is inherent to direct-to-consumer genomic testing. Journal of Medical Ethics.  https://doi.org/10.1136/medethics-2015-103057.Google Scholar
  12. Corpas, Manuel. 2012. A family experience of personal genomics. Journal of Genetic Counseling 21 (3): 386–391.  https://doi.org/10.1007/s10897-011-9473-7.CrossRefGoogle Scholar
  13. Covolo, Loredana, Sara Rubinelli, Elisabetta Ceretti, and Umberto Gelatti. 2015. Internet-based direct-to-consumer genetic testing: A systematic review. Journal of Medical Internet Research 17 (12): e279.  https://doi.org/10.2196/jmir.4378.CrossRefGoogle Scholar
  14. Critchley, Christine, Dianne Nicol, Margaret Otlowski, and Don Chalmers. 2015. Public reaction to direct-to-consumer online genetic tests: Comparing attitudes, trust and intentions across commercial and conventional providers. Public Understanding of Science 24 (6): 731–750.CrossRefGoogle Scholar
  15. Goldsmith, Lesley, Leigh Jackson, Anita O’Connor, and Heather Skirton. 2012. Direct-to-consumer genomic testing: Systematic review of the literature on user perspectives. European Journal of Human Genetics 20 (8): 811–816.  https://doi.org/10.1038/ejhg.2012.18.CrossRefGoogle Scholar
  16. Gollust, Sarah E., Erynn S. Gordon, C. Zayac, Georgia Griffin, M. F. Christman, R. E. Pyeritz, Lisa Wawak, and Barbara A. Bernhardt. 2012. Motivations and perceptions of early adopters of personalized genomics: Perspectives from research participants. Public Health Genomics 15 (1): 22–30.  https://doi.org/10.1159/000327296.CrossRefGoogle Scholar
  17. Gordon, Erynn S., Georgia Griffin, Lisa Wawak, Hauchie Pang, E. Sarah, Gollust, and Barbara A. Bernhardt. 2012. It’s not like judgment day”: Public understanding of and reactions to personalized genomic risk information. Journal of Genetic Counseling 21 (3): 423–432.  https://doi.org/10.1007/s10897-011-9476-4.CrossRefGoogle Scholar
  18. Hoedemaekers, Rogeer, and Henk ten Have. 1998. Commercialisation of genetic diagnostic services. Medicine, Health Care and Philosophy 1 (3): 217–224.  https://doi.org/10.1023/a:1009913008908.CrossRefGoogle Scholar
  19. Hogarth, Stuart, Gail Javitt, and David Melzer. 2008. The current landscape for direct-to-consumer genetic testing: Legal, ethical, and policy issues. Annual Review of Human Genomics and Human Genetics 9: 161–182.  https://doi.org/10.1146/annurev.genom.9.081307.164319.CrossRefGoogle Scholar
  20. Howard, Heidi Carmen, and Pascal Borry. 2013. Survey of European clinical geneticists on awareness, experiences and attitudes towards direct-to-consumer genetic testing. Genome Medicine 5 (5): 45–45.  https://doi.org/10.1186/gm449.CrossRefGoogle Scholar
  21. Janssens, A. Cecile, and M. Cornelia van Duijn. 2010. An epidemiological perspective on the future of direct-to-consumer personal genome testing. Investigative Genetics 1 (1): 10.  https://doi.org/10.1186/2041-2223-1-10.CrossRefGoogle Scholar
  22. Karsch, Fabian. 2015. Medizin zwischen Markt und Moral. Zur Kommerzialisierung ärztlicher Handlungsfelder. Bielefeld: Transcript.Google Scholar
  23. Kohler, Jennefer N., Erin Turbitt, K. L. Lewis, Benjamin S. Wilfond, Leila Jamal, Holly Landrum Peay, Leslie G. Biesecker, and Barbara B. Biesecker. 2017. Defining personal utility in genomics: A Delphi study. Clinical Genetics.  https://doi.org/10.1111/cge.12998.Google Scholar
  24. Krippendorf, Klaus. 2013. Content analysis. An introduction to its methodology. Los Angeles: Sage.Google Scholar
  25. Laestadius, Linnea I., R. Jennifer Rich, and Paul L. Auer. 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.CrossRefGoogle Scholar
  26. Leefmann, Jon, Manuel Schaper, and Silke Schicktanz. 2017. The concept of “Genetic responsibility” and its meanings: A systematic review of qualitative medical sociology literature. Frontiers in Sociology.  https://doi.org/10.3389/fsoc.2016.00018.Google Scholar
  27. Loi, Michele. 2016. Direct to consumer genetic testing and the libertarian right to test. Journal of Medical Ethics 42 (9): 574–577.  https://doi.org/10.1136/medethics-2015-102827.CrossRefGoogle Scholar
  28. Mavroidopoulou, Vasiliki, Ellie Xera, and Vasiliki Mollaki. 2015. Awareness, attitudes and perspectives of direct-to-consumer genetic testing in Greece: A survey of potential consumers. Journal of Human Genetics 60: 515.  https://doi.org/10.1038/jhg.2015.58.CrossRefGoogle Scholar
  29. Metschke, Rainer, and Rita Wellbrock. 2002. Datenschutz in Wissenschaft und Forschung. Materialien zum Datenschutz 28.Google Scholar
  30. Niemiec, Emilia, and Heidi Carmen Howard. 2016. Ethical issues in consumer genome sequencing: Use of consumers’ samples and data. Applied & Translational Genomics 8: 23–30.  https://doi.org/10.1016/j.atg.2016.01.005.CrossRefGoogle Scholar
  31. O’Doherty, Kieran C., Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig, and Donald J. Willison. 2016. If you build it, they will come: Unintended future uses of organised health data collections. BMC Medical Ethics 17 (1): 54.  https://doi.org/10.1186/s12910-016-0137-x.CrossRefGoogle Scholar
  32. O’Neill, Onora. 2002. Autonomy and trust in bioethics. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  33. Obar, Jonathan A., and Anne Oeldorf-Hirsch. 2016. The biggest lie on the internet: Ignoring the privacy policies and terms of service policies of social networking services. Paper presented at the TPRC 44: The 44th research conference on communication, information and internet policy 2016.  https://doi.org/10.2139/ssrn.2757465.
  34. Oliveri, Serana, Marianna Masiero, Paola Arnaboldi, Ilaria Cutica, Chiara Fioretti, and Gabriella Pravettoni. 2016. Health orientation, knowledge, and attitudes toward genetic testing and personalized genomic services: Preliminary data from an Italian sample. BioMed Research International 2016: 6824581.  https://doi.org/10.1155/2016/6824581.CrossRefGoogle Scholar
  35. Plöthner, Marika, Mike Klora, Daniel Rudolph, and Johann-Matthias Graf von der Schulenburg. 2017. Health-related genetic direct-to-consumer tests in the German setting: The available offer and the potential implications for a solidarily financed health-care system. Public Health Genomics.  https://doi.org/10.1159/000477559.Google Scholar
  36. Roberts, J. Scott, Michele C. Gornick, Deanna Alexis Carere, Wendy R. Uhlmann, Mack T. Ruffin, and Robert C. Green. 2017. Direct-to-consumer genetic testing: User motivations, decision making, and perceived utility of results. Public Health Genomics.  https://doi.org/10.1159/000455006.Google Scholar
  37. Salm, Melissa, Kristopher Abbate, Paul Appelbaum, Ruth Ottman, Wendy Chung, Karen Marder, Cheng-Shiun Leu, Roy Alcalay, Jill Goldmann, Alexander Malik Curtis, Christopher Leech, Katherine Johansen Taber, and Robert Klitzmann. 2014. Use of genetic tests among neurologists and psychiatrists: Knowledge, attitudes, behaviors, and needs for training. Journal of Genetic Counseling 23 (2): 156–163.  https://doi.org/10.1007/s10897-013-9624-0.CrossRefGoogle Scholar
  38. Saukko, Paula. 2013. State of play in direct-to-consumer genetic testing for lifestyle-related diseases: Market, marketing content, user experiences and regulation. Proceedings of the Nutrition Society 72 (1): 53–60.  https://doi.org/10.1017/s0029665112002960.CrossRefGoogle Scholar
  39. Sherman, Kerry, Laura-Kate Shaw, Katrina Champion, Fernanda Caldeira, and Margaret McCaskill. 2015. The effect of disease risk probability and disease type on interest in clinic-based versus direct-to-consumer genetic testing services. Journal of Behavioral Medicine 38 (5): 706–714.CrossRefGoogle Scholar
  40. Siegrist, Johannes. 2012. Die ärztliche Rolle im Wandel. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz 55 (9): 1100–1105.  https://doi.org/10.1007/s00103-012-1527-y (original in German).CrossRefGoogle Scholar
  41. Sterckx, Sigrid., Julian Cockbain, Heidi Carmen Howard, Isabelle Huys, and Pascal Borry. 2013. “Trust is not something you can reclaim easily”: Patenting in the field of direct-to-consumer genetic testing. Genetics in Medicine 15 (5): 382–387.  https://doi.org/10.1038/gim.2012.143.CrossRefGoogle Scholar
  42. Stoeklé, Henri-Corto, Marie-France Mamzer-Bruneel, Guillaume Vogt, and Christian Hervé. 2016. 23andMe: A new two-sided data-banking market model. BMC Medical Ethics 17: 19.  https://doi.org/10.1186/s12910-016-0101-9.CrossRefGoogle Scholar
  43. Su, Pascal. 2013. Direct-to-consumer genetic testing: A comprehensive view. The Yale Journal of Biology and Medicine 86 (3): 359–365.Google Scholar
  44. Turrini, Mauro, and Barbara Prainsack. 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.CrossRefGoogle Scholar
  45. Vayena, Effy., Elli G. Gourna, Jürg C. Streuli, Ernst Hafen, and Barbara Prainsack. 2012. Experiences of early users of direct-to-consumer genomics in Switzerland: An exploratory study. Public Health Genomics 15 (6): 352–362.  https://doi.org/10.1159/000343792.CrossRefGoogle Scholar
  46. Vayena, Effy, Christian Ineichen, Elia Stoupka, and Ernst Hafen. 2014. Playing a part in research? University students’ attitudes to direct-to-consumer genomics. Public Health Genomics 17 (3): 158–168.  https://doi.org/10.1159/000360257.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V., part of Springer Nature 2018

Authors and Affiliations

  1. 1.Department of Medical Ethics and History of MedicineUniversity Medical Center GöttingenGöttingenGermany

Personalised recommendations