Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience

Sarah E. Gollust; Stacy W. Gray; Deanna Alexis Carere; Barbara A. Koenig; Lisa Soleymani Lehmann; A. M.Y.L. McGuire; Richard R. Sharp; Kayte Spector-Bagdady; Na Wang; robert C. Green; J. Scott Roberts; for the PGen Study Group

doi:10.1111/1468-0009.12262

Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience

Sarah E. Gollust, Stacy W. Gray, Deanna Alexis Carere, Barbara A. Koenig, Lisa Soleymani Lehmann, A. M.Y.L. McGuire, Richard R. Sharp, Kayte Spector-Bagdady, Na Wang, robert C. Green, J. Scott Roberts, for the PGen Study Group

Research output: Contribution to journal › Article › peer-review

13 Scopus citations

Original language	English (US)
Pages (from-to)	291-318
Number of pages	28
Journal	Milbank Quarterly
Volume	95
Issue number	2
DOIs	https://doi.org/10.1111/1468-0009.12262
State	Published - Jun 2017

Bibliographical note

Funding Information:
The PGen Study is supported by the National Institutes of Health (NIH) National Human Genome Research Institute (R01-HG005092). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources, or the National Institutes of Health. Robert C. Green is also supported by U01-HG006500 and U41-HG006834. Amy L. McGuire is also supported by U01-HG006500. Deanna Alexis Carere is funded by a Canadian Institutes of Health Research Postdoctoral Fellowship Award and by the Michael G. DeGroote Postdoctoral Fellowship from McMaster University. Barbara Koenig is also supported by P20 HG007243. Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. The research team partnered with 23andMe and Pathway Genomics in order to gain access to consumers of their services for implementation of the surveys described in our manuscript. However, these companies did not provide funding for the project, and this manuscript was independently conceived and completed. Outside of the submitted work, Amy McGuire provided consulting services to Human Longevity Inc, and Richard Sharp was a noncompensated adviser to 23andMe, which supported his travel to attend an in-person meeting held near the company's headquarters. Acknowledgments: Nonauthor members of the PGen Study at the time of publication are as follows: Joel B. Krier, Margaret H. Helm, Sarah S. Kalia, Kurt D. Christensen, Harvard Medical School and Brigham and Women's Hospital; Mack T. Ruffin IV, Lan Q. Le, Jenny Ostergren, University of Michigan School of Public Health; Wendy R. Uhlmann, Mick P. Couper, University of Michigan; Joanna L. Mountain, Amy K. Kiefer, 23andMe; Glenn Braunstein, Pathway Genomics; Scott D. Crawford, SoundRocket; L. Adrienne Cupples, Clara A. Chen, Catharine Wang, Boston University; Kimberly Kaphingst, University of Utah. The authors acknowledge helpful discussion on some of the ideas in this article with Patricia J. Zettler, JD.

Keywords

ethics
genetic testing
public opinion
regulation

Access

10.1111/1468-0009.12262

Cite this

Gollust, S. E., Gray, S. W., Carere, D. A., Koenig, B. A., Lehmann, L. S., McGuire, A. M. Y. L., Sharp, R. R., Spector-Bagdady, K., Wang, N., Green, R. C., Roberts, J. S., & for the PGen Study Group (2017). Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience. Milbank Quarterly, 95(2), 291-318. https://doi.org/10.1111/1468-0009.12262

Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing : Role of Demographic Factors and the Testing Experience. / Gollust, Sarah E.; Gray, Stacy W.; Carere, Deanna Alexis; Koenig, Barbara A.; Lehmann, Lisa Soleymani; McGuire, A. M.Y.L.; Sharp, Richard R.; Spector-Bagdady, Kayte; Wang, Na; Green, robert C.; Roberts, J. Scott; for the PGen Study Group.

In: Milbank Quarterly, Vol. 95, No. 2, 06.2017, p. 291-318.

Research output: Contribution to journal › Article › peer-review

Gollust, SE, Gray, SW, Carere, DA, Koenig, BA, Lehmann, LS, McGuire, AMYL, Sharp, RR, Spector-Bagdady, K, Wang, N, Green, RC, Roberts, JS & for the PGen Study Group 2017, 'Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience', Milbank Quarterly, vol. 95, no. 2, pp. 291-318. https://doi.org/10.1111/1468-0009.12262

Gollust, Sarah E. ; Gray, Stacy W. ; Carere, Deanna Alexis ; Koenig, Barbara A. ; Lehmann, Lisa Soleymani ; McGuire, A. M.Y.L. ; Sharp, Richard R. ; Spector-Bagdady, Kayte ; Wang, Na ; Green, robert C. ; Roberts, J. Scott ; for the PGen Study Group. / Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing : Role of Demographic Factors and the Testing Experience. In: Milbank Quarterly. 2017 ; Vol. 95, No. 2. pp. 291-318.

@article{3bf403a6362a4c0eae08aa297958d3eb,

title = "Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience",

keywords = "ethics, genetic testing, public opinion, regulation",

author = "Gollust, {Sarah E.} and Gray, {Stacy W.} and Carere, {Deanna Alexis} and Koenig, {Barbara A.} and Lehmann, {Lisa Soleymani} and McGuire, {A. M.Y.L.} and Sharp, {Richard R.} and Kayte Spector-Bagdady and Na Wang and Green, {robert C.} and Roberts, {J. Scott} and {for the PGen Study Group}",

note = "Funding Information: The PGen Study is supported by the National Institutes of Health (NIH) National Human Genome Research Institute (R01-HG005092). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources, or the National Institutes of Health. Robert C. Green is also supported by U01-HG006500 and U41-HG006834. Amy L. McGuire is also supported by U01-HG006500. Deanna Alexis Carere is funded by a Canadian Institutes of Health Research Postdoctoral Fellowship Award and by the Michael G. DeGroote Postdoctoral Fellowship from McMaster University. Barbara Koenig is also supported by P20 HG007243. Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. The research team partnered with 23andMe and Pathway Genomics in order to gain access to consumers of their services for implementation of the surveys described in our manuscript. However, these companies did not provide funding for the project, and this manuscript was independently conceived and completed. Outside of the submitted work, Amy McGuire provided consulting services to Human Longevity Inc, and Richard Sharp was a noncompensated adviser to 23andMe, which supported his travel to attend an in-person meeting held near the company's headquarters. Acknowledgments: Nonauthor members of the PGen Study at the time of publication are as follows: Joel B. Krier, Margaret H. Helm, Sarah S. Kalia, Kurt D. Christensen, Harvard Medical School and Brigham and Women's Hospital; Mack T. Ruffin IV, Lan Q. Le, Jenny Ostergren, University of Michigan School of Public Health; Wendy R. Uhlmann, Mick P. Couper, University of Michigan; Joanna L. Mountain, Amy K. Kiefer, 23andMe; Glenn Braunstein, Pathway Genomics; Scott D. Crawford, SoundRocket; L. Adrienne Cupples, Clara A. Chen, Catharine Wang, Boston University; Kimberly Kaphingst, University of Utah. The authors acknowledge helpful discussion on some of the ideas in this article with Patricia J. Zettler, JD.",

year = "2017",

month = jun,

doi = "10.1111/1468-0009.12262",

language = "English (US)",

volume = "95",

pages = "291--318",

journal = "Milbank Quarterly",

issn = "0887-378X",

publisher = "Wiley-Blackwell",

number = "2",

}

TY - JOUR

T1 - Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing

T2 - Role of Demographic Factors and the Testing Experience

AU - Gollust, Sarah E.

AU - Gray, Stacy W.

AU - Carere, Deanna Alexis

AU - Koenig, Barbara A.

AU - Lehmann, Lisa Soleymani

AU - McGuire, A. M.Y.L.

AU - Sharp, Richard R.

AU - Spector-Bagdady, Kayte

AU - Wang, Na

AU - Green, robert C.

AU - Roberts, J. Scott

AU - for the PGen Study Group

N1 - Funding Information: The PGen Study is supported by the National Institutes of Health (NIH) National Human Genome Research Institute (R01-HG005092). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Research Resources, or the National Institutes of Health. Robert C. Green is also supported by U01-HG006500 and U41-HG006834. Amy L. McGuire is also supported by U01-HG006500. Deanna Alexis Carere is funded by a Canadian Institutes of Health Research Postdoctoral Fellowship Award and by the Michael G. DeGroote Postdoctoral Fellowship from McMaster University. Barbara Koenig is also supported by P20 HG007243. Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. The research team partnered with 23andMe and Pathway Genomics in order to gain access to consumers of their services for implementation of the surveys described in our manuscript. However, these companies did not provide funding for the project, and this manuscript was independently conceived and completed. Outside of the submitted work, Amy McGuire provided consulting services to Human Longevity Inc, and Richard Sharp was a noncompensated adviser to 23andMe, which supported his travel to attend an in-person meeting held near the company's headquarters. Acknowledgments: Nonauthor members of the PGen Study at the time of publication are as follows: Joel B. Krier, Margaret H. Helm, Sarah S. Kalia, Kurt D. Christensen, Harvard Medical School and Brigham and Women's Hospital; Mack T. Ruffin IV, Lan Q. Le, Jenny Ostergren, University of Michigan School of Public Health; Wendy R. Uhlmann, Mick P. Couper, University of Michigan; Joanna L. Mountain, Amy K. Kiefer, 23andMe; Glenn Braunstein, Pathway Genomics; Scott D. Crawford, SoundRocket; L. Adrienne Cupples, Clara A. Chen, Catharine Wang, Boston University; Kimberly Kaphingst, University of Utah. The authors acknowledge helpful discussion on some of the ideas in this article with Patricia J. Zettler, JD.

PY - 2017/6

Y1 - 2017/6

KW - ethics

KW - genetic testing

KW - public opinion

KW - regulation

UR - http://www.scopus.com/inward/record.url?scp=85020296368&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85020296368&partnerID=8YFLogxK

U2 - 10.1111/1468-0009.12262

DO - 10.1111/1468-0009.12262

M3 - Article

C2 - 28589610

AN - SCOPUS:85020296368

VL - 95

SP - 291

EP - 318

JO - Milbank Quarterly

JF - Milbank Quarterly

SN - 0887-378X

IS - 2

ER -