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

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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.

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Notes

  1. Conducting a web search in early 2017, we found about 90 companies worldwide marketing genetic/genomic tests or interpretation of test results. A recent study by Plöthner et al. (2017) identified a total of 35 companies worldwide offering health-related testing, which is theoretically available for German residents.

  2. Personal experience means that the person has undergone genetic or genomic testing in the past or witnessed it in a relative or another person. Experience with prenatal diagnostics was not considered as personal experience with genetic testing in this sense, which is why other participants were preferred during recruitment.

  3. Lifestyle tests in this context means genetic tests delivering information on how to improve diet and exercise as well as tests serving a purely recreational or entertainment purpose.

  4. Examples: coronary heart disease—50.2% risk/average risk 46.8%; obesity—63.4% risk/average risk 63.9%.

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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.

Funding

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

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Authors and Affiliations

  1. Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany

    Manuel Schaper, Sabine Wöhlke & Silke Schicktanz

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  1. Manuel Schaper
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  2. Sabine Wöhlke
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  3. Silke Schicktanz
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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.

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Correspondence to Manuel Schaper.

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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).

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Schaper, M., Wöhlke, S. & Schicktanz, S. “I would rather have it done by a doctor”—laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications. Med Health Care and Philos 22, 31–40 (2019). https://doi.org/10.1007/s11019-018-9837-y

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