TY - JOUR
T1 - Willingness to participate in genomics research and desire for personal results among underrepresented minority patients
T2 - A structured interview study
AU - Sanderson, Saskia C.
AU - Diefenbach, Michael A.
AU - Zinberg, Randi
AU - Horowitz, Carol R.
AU - Smirnoff, Margaret
AU - Zweig, Micol
AU - Streicher, Samantha
AU - Jabs, Ethylin Wang
AU - Richardson, Lynne D.
N1 - Funding Information:
This was a structured interview study conducted with patients attending an outpatient clinic at a hospital in New York City (NYC). The study was part of the ENGAGE Project (Evaluating information Needs to Generate Community Engagement and Genetics Education) which was supported by The Charles Bronfman Institute of Personalized Medicine. The study was reviewed and approved by the Icahn School of Medicine at Mount Sinai IRB.
PY - 2013/10
Y1 - 2013/10
N2 - 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 openended 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 lowincome, 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.
AB - 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 openended 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 lowincome, 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.
KW - Genomicsresearch
KW - Interest
KW - Interviews
KW - Patients
KW - Personal results
UR - https://www.scopus.com/pages/publications/84885011052
U2 - 10.1007/s12687-013-0154-0
DO - 10.1007/s12687-013-0154-0
M3 - Article
AN - SCOPUS:84885011052
SN - 1868-310X
VL - 4
SP - 469
EP - 482
JO - Journal of Community Genetics
JF - Journal of Community Genetics
IS - 4
ER -