Black African immigrant community leaders' views on participation in genomics research and DNA biobanking.

BACKGROUND

The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all.

PURPOSE

The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation.

METHODS

As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities.

FINDINGS/DISCUSSION: Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise.

CONCLUSION

To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy.