Ethical and Sociocultural Implications of Genetic Testing in Transplantation

The objective of this study is to assess the ethical and sociocultural implications of physicians’ use of APOL1 testing for AA LDs, and to develop culturally sensitive educational materials for genetic counseling about APOL1 testing. We will assess the transplant community’s normative expectations, attitudes, and current practices about testing AA potential LDs for APOL1 variants through a national survey. We will also assess AA LDs’ information preferences, attitudes about, and willingness to be tested for APOL1 variants through semi-structured interviews. The results will inform the development of culturally sensitive education materials for genetic counseling about APOL1 testing, which will be refined by focus groups with AA LDs. The proposed study is timely because APOL1 testing could increase AA potential LDs’ safety and reduce disparities in AA LD outcomes. This study facilitates NHGRI’s initiative to better understand the implementation of emerging clinical genomics into clinical practice, consistent with the NIH’s precision medicine’s initiative.