Genetic research in the blood bank: acceptability to Northern California donors

Blood banks may be uniquely positioned to conduct large genetic epidemiologic studies. They have a broad donor base, collect blood samples frequently, test them for infectious agents using nucleic acid technology, and routinely collect demographic (phenotype) information into large databases.1 Large repositories of banked specimens from blood donors exist.2 At the same time, blood donor return rates are of increasing concern to blood banks and the potential adverse impact of genetic studies on these rates are unknown.3,4 Researchers have examined participation rates in genetic studies in other US populations and have found that the acceptability of allowing future unlimited research on stored specimens varies widely. In a recent review, Sterling and coworkers5 found that consent rates for genetic studies among individuals who had previously participated in health research ranged from 21% to 85%. Consent rates varied by demographic characteristics such as sex and race and/or ethnicity. The REDS-II study recently reported that 91% of donors who consented for a study of HLA antibodies were also willing to have their blood samples stored in a biorepository for future research use to “improve our understanding of transfusion biology and transfusion safety.”6 Odds of repository participation were lower for subjects who were African American or Hispanic, were 35 to 44 years old, or had not completed high school and were lowest at one geographic location, regardless of other variables. But to our knowledge, there have been no studies specifically examining US blood donor opinions on participation in genetic research or testing and intention of ongoing donation if such research were undertaken by the blood center. We therefore conducted a survey among blood donors with three goals: to assess blood donor interest in participating in genetic studies through blood banks, to measure the potential impact of genetic studies on future blood donations, and to estimate donor interest in genetic testing offered by blood banks as an optional service.