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. 2020 Mar 4:2019:774-783.
eCollection 2019.

Public Attitudes Toward Direct to Consumer Genetic Testing

Grayson L Ruhl  1 , James W Hazel  1 , Ellen Wright Clayton  1 , Bradley A Malin  1
Affiliations

Public Attitudes Toward Direct to Consumer Genetic Testing

Grayson L Ruhl et al. AMIA Annu Symp Proc. .

Abstract

Direct to consumer genetic testing (DTC-GT) is an emerging service that allows individuals to have their DNA tested without having to consult a healthcare provider. DTC-GT can provide insight into various aspects about an individual, including their health and ancestry. However, testing may pose privacy risks and yield distressing results. Despite the growing popularity of DTC-GT, public attitudes toward such services remain largely ill-defined. Using Amazon Mechanical Turk, we administered a web-based survey to over 1,000 individuals to obtain intuition into public attitudes about DTC-GT. S urvey questions were grounded in a literature review of people's views about DTC-GT. The results of the survey indicated that respondents were interested in DTC-GT as a possible way to gain insight about health, ancestry, and family relationships, as well as advance research. Despite this, respondents were concerned that DTC-GT companies and other users of their DTC-GT data would infringe upon their privacy.

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Figures

Figure 1:
Figure 1:
Responses to the question, “Have you ever taken a DTC genetic test?”
Figure 2:
Figure 2:
Responses to the question, “Why did you decide to take a DTC genetic test?”
Figure 3:
Figure 3:
Responses to the question, “How motivated would you be to have DTC genetic testing if your ___ thought it was a good idea?”
Figure 4:
Figure 4:
Responses to the question, “How motivated would you be to have DTC genetic testing if…”
Figure 5:
Figure 5:
Responses to the question, “How much do you think that DTC genetic testing could provide useful or interesting information about…”
Figure 6:
Figure 6:
Responses to the question, “How concerned are you that DTC Respondents were also asked how genetic testing companies would…”
Figure 7:
Figure 7:
Responses to the question, “How concerned are you that users of your results will fail to protect your privacy?”
Figure 8:
Figure 8:
Responses to the question, “When do you believe that users of your DTC genetic test should report new results to you that indicate health concerns?”
Figure 9:
Figure 9:
Responses to the question, “How concerned are you that genetic test results about the following would disrupt your family relationships?”
Figure 10:
Figure 10:
Responses to the question, “With which of the following groups are you comfortable sharing your DTC genetic testing results?”
Figure 11:
Figure 11:
Responses to the question, “To what extent are you concerned that law enforcement can access peoples’ DTC-GT test results?”
Figure 12:
Figure 12:
Responses to the question, “To what extent should law enforcement have access to people’s DTC genetic test results to use for investigative purposes?”
See this image and copyright information in PMC

References

    1. Park ST, Kim J. Trends in Next-Generation Sequencing and a New Era for Whole Genome Sequencing. Int Neurourol J. 2016;20(Suppl 2):S76–83. - PMC - PubMed
    1. National Human Genome Research Institute. The Cost of Sequencing a Human Genome. [Internet]. 2018 Available from: https://www.genome.gov/27565109/the-cost-of-sequencing-a-human-genome/
    1. Bellcross CA, Page PZ, Meaney-Delman D. Direct-to-consumer personal genome testing and cancer risk prediction. Cancer J. 2012;18(4):293–302. - PubMed
    1. U.S. National. Library of Medicine. What is direct-to-consumer genetic testing? [Internet] 2018 Available from: https://ghr.nlm.nih.gov/primer/testing/directtoconsumer.
    1. 23andme.com. [Internet]. 2018 Available from: www.23andme.com.

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