University of Wisconsin-Milwaukee, College of Nursing, Milwaukee, WI 53201, USA.
Nurs Outlook. 2013 Jul-Aug;61(4):196-204. doi: 10.1016/j.outlook.2012.10.004. Epub 2012 Dec 4.
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.
The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation.
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.
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.
DNA 生物库的出现及其为基因组学研究提供的力量有望在疾病预防和治疗方面取得重大进展。为了确保所有人都能享受到个性化医疗的未来，有必要让更多的少数族裔人口参与进来。
本研究旨在探讨非裔美国移民对基因组学研究和 DNA 生物库的看法，这是非裔美国人这一经常被忽视的美国亚群体。
作为使用社区参与式研究 (CBPR) 方法的更大阶段研究的一部分，我们与黑非裔移民社区的 27 位领袖进行了四次焦点小组讨论，探讨了他们对基因组学的看法、参与 DNA 生物库的障碍和促进因素以及社区参与的道德途径。
发现/讨论：他们对基因组学研究的看法主要集中在殖民时期西方研究人员在撒哈拉以南非洲国家对其人民的虐待和剥削的遗留问题上。参与者的核心困境是在保护其人民免受伤害和为非洲子孙后代寻找解决方案之间取得平衡。他们坚持认为，只有彻底改变研究实践，才能让非洲移民充分、持续地参与到基因组学事业中来。
为了使基因组学研究和 DNA 生物库领域的实践和政策更好地与非裔美国移民领袖所表达的价值观保持一致，建议该领域采用 CBPR 模型进行研究，并采用利益共享模型制定政策。
