Pilot assessment of HIV gene therapy-hematopoietic stem cell clinical trial acceptability among minority patients and their advisors.

ABSTRACT

Clinical trials involving technologically involved novel treatments such as gene therapy delivered through hematopoietic stem cells as human immunodeficiency virus (HIV) treatment will need to recruit ethnically diverse patients to ensure the acceptance among broad groups of individuals and generalizability of research findings. Five focus groups of 47 HIV-positive men and women, religious and community leaders and health providers, mostly from African American and low-income communities, were conducted to examine knowledge about gene therapy and stem cell research and to assess the moral and ethical beliefs that might influence participation in clinical trials. Three themes emerged from these groups (1) the need for clarification of terminology and the ethics of understanding gene therapy-stem cell research, (2) strategies to avoid mistrust of medical procedures and provider mistrust, and (3) the conflict between science and religious beliefs as it pertains to gene therapy-stem cell research.