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Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

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Abstract

Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p < 0.001). Participants were more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p < 0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

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Acknowledgments

This work was supported by the Seed Grant Program of The Charles Bronfman Institute for Personalized Medicine and UL1RR029887 from the National Center for Advancing Translational Sciences, National Institutes of Health. Partial support was provided through U01HG006380 to Mount Sinai School of Medicine from the electronic medical records and genomics (eMERGE) network of the National Human Genome Research Institute, National Institutes of Health. We gratefully acknowledge the assistance of our dedicated interviewers Patria Gerardo, Pauline Johnson, Janice Lam, Natalia Lyons and Sayume Romero. Most importantly, we are very grateful to all the individuals who participated in this study.

Compliance with Ethics Guidelines

Saskia C. Sanderson, Michael A. Diefenbach, Randi Zinberg, Carol R. Horowitz, Margaret Smirnoff, Micol Zweig, Samantha Streicher, Ethylin Wang Jabs, and Lynne D. Richardson declare that they have no conflict of interest. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

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  1. Samantha Streicher

    Present address: Yale School of Public Health, Yale University, 60 College Street, New Haven, CT, 065-20, USA

Authors and Affiliations

  1. Department of Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai, 1428 Madison Ave, New York, NY, 10029, USA

    Saskia C. Sanderson, Randi Zinberg, Micol Zweig, Samantha Streicher & Ethylin Wang Jabs

  2. Department of Urology, Icahn School of Medicine at Mount Sinai, New York, NY, 10029, USA

    Michael A. Diefenbach

  3. Department of Health Evidence and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, 10029, USA

    Carol R. Horowitz & Lynne D. Richardson

  4. Department of Nursing, Icahn School of Medicine at Mount Sinai, New York, NY, 10029, USA

    Margaret Smirnoff

  5. Department of Emergency Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, 10029, USA

    Lynne D. Richardson

  6. The Charles Bronfman Institute of Personalized Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, 10029, USA

    Saskia C. Sanderson, Michael A. Diefenbach, Randi Zinberg, Carol R. Horowitz, Margaret Smirnoff, Micol Zweig, Samantha Streicher, Ethylin Wang Jabs & Lynne D. Richardson

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  1. Saskia C. Sanderson
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Correspondence to Saskia C. Sanderson.

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Sanderson, S.C., Diefenbach, M.A., Zinberg, R. et al. Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study. J Community Genet 4, 469–482 (2013). https://doi.org/10.1007/s12687-013-0154-0

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