Despite a willingness to participate, significant social issues for AAs remain to be addressed. Disparities in access, insensitive, and discriminatory programming, a lack of appreciation of environmental factors, and misuse of genetic databases are among the challenges.81 In addition, issues related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (ie, the distribution of financial or other assets that result from the research) are of concern.82 These concerns are increased as researchers engage in studies which include data sharing both nationally and internationally.82 One study that assessed AA willingness to participate in genome-wide study that required the storage of genotypic and phenotypic data at NIH for distribution to qualified researchers found that fears included losing health insurance, being used as a guinea pig, questions on how the information would be used, and who would have access to it. Factors that have been associated with an increased willingness to participate in genetic research include greater knowledge of genetics, an
