243199 Attitudes towards receiving personal results from genomics research: A structured interview study

Sunday, October 30, 2011

Saskia C. Sanderson, PhD , Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY
Samantha Streicher, MPH , Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY
Ethylin Jabs, MD , Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY
Michael Diefenbach, PhD , Department of Urology, Mount Sinai School of Medicine, New York, NY
Barbara Brenner, DrPH, MSW , Department of Community and Preventive Medicine, Mount Sinai School of Medicine, New York, NY
Margaret Smirnoff, RN , Department of Nursing, Mount Sinai School of Medicine, New York, NY
Randi Zinberg, MS, CGC , Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY
Rosamond Rhodes, PhD , Department of Medical Education, Mount Sinai School of Medicine, New York, NY
Carol Horowitz, MD, MPH , Departments of Health Policy and Medicine, Mount Sinai School of Medicine, New York, NY
Inga Peter, PhD , Department of Genetics and Genomic Sciences, Mount Sinai School of Medicine, New York, NY
Lynne Richardson, MD , Department of Emergency Medicine, Mount Sinai School of Medicine, New York, NY
Genomics research requires ever increasing numbers of people to participate and contribute their DNA. The question of whether personal results from genomics research should be returned to participating individuals is becoming more pressing. It is vital that voices are heard on this from diverse communities. This study examined ethnically diverse patients' attitudes towards receiving personal results from genomics research. Structured interviews were conducted with patients (n=205) attending an inner-city outpatient hospital clinic. The interview content focused on attitudes towards genetic research on four common diseases. Overall, 48% participants were Black/African American, 29% Hispanic/Latino, 10% White, 13% Other; 69% were female; mean age 50 (range 22-85) yrs. 52% participants said they would definitely participate in genetics research in which they were offered personal genetic information, whilst only 22% said they would definitely participate if they were not offered personal genetic information (p<0.001). When asked about specific diseases, 70% reported they would definitely want personal genetic risk results for cancer, 68% for heart disease, 68% for type 2 diabetes, and 61% for obesity. There were few differences according to race/ethnicity. Participants with at least one relative affected with diabetes were more likely than those with no affected relatives to say they would definitely want personal genetic results for type 2 diabetes (73% vs. 59% respectively, p<0.05). In conclusion, patients are interested in receiving personal results from genomics research. The extent to which this interest is attenuated by explanation of the uncertainties regarding personalized information from genomics research remains to be determined.

Learning Areas:
Assessment of individual and community needs for health education
Planning of health education strategies, interventions, and programs
Social and behavioral sciences

Learning Objectives:
Explain public interest in receiving personal results from genomics research into common complex conditions Discuss the role of race and ethnicity in people's interest in receiving personal results from genomics research

Keywords: Genetics, Survey

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am Co-PI on the research reported in the abstract, an Assistant Professor in Genetics and Genomic Sciences, and have over 10 years experience in public health genomics research.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: Issues in Public Health Genomics
See more of: Genomics Forum