Saskia C. Sanderson|Michael A. Diefenbach|Randi E. Zinberg|Carol R. Horowitz|Meg Smirnoff|Micol Zweig|Samantha A. Streicher|Ethylin Wang Jabs|Lynne D. Richardson
Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study
Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai|Icahn School of Medicine at Mount Sinai
patients traditionally underrepresented communities need involved discussions around genomics research including attitudes towards participation receiving personal results structured interviews including openended closedended questions conducted 205 patients innercity hospital outpatient clinic 48 participants selfidentified black african american 29 hispanic 10 white 49 annual household income 20000 potential personal results returned mentioned 82 participants willing participate genomics research reasons willingness fell four themes altruism benefit family members personal health benefit personal curiosity improving understanding reasons unwilling fell five themes negative perception research personally relevant negative feelings procedures eg blood draws practical barriers fear results participants likely report would participate genomics research personal results offered offered 89 vs 62 respectively p 0001 participants interested receiving personal genomic risk results cancer heart disease type 2 diabetes obesity 89 89 91 80 respectively p 0001 characteristic consistently associated interest receiving personal results diseasespecific worry considerable willingness participate desire personal results genomics research sample predominantly lowincome hispanic african american patients returning results practical even alternatively additionally providing generic information genomics health may also valuable commodity underrepresented minority populations considering participating genomics research