Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua

被引:2
作者
Delgado, Iris S. [1 ,2 ]
Outterson, Abigail [1 ]
Ramesh, Vaishnavi [1 ]
Amador Sanchez, Alda Gabriela [1 ]
Boza, Alfonso Cesar [1 ]
Lopez-Pilarte, Damaris [1 ,2 ]
Amador Velazquez, Juan Jose [1 ,2 ]
Friedman, David J. [3 ]
Brooks, Daniel R. [1 ]
Scammell, Madeleine K. [2 ]
Wang, Catharine [4 ]
机构
[1] Boston Univ, Dept Epidemiol, Sch Publ Hlth, Boston, MA 02215 USA
[2] Boston Univ, Dept Environm Hlth, Sch Publ Hlth, Boston, MA 02215 USA
[3] Beth Israel Deaconess Med Ctr, Renal Div, Boston, MA USA
[4] Boston Univ, Dept Commun Hlth Sci, Sch Publ Hlth, Boston, MA USA
基金
美国国家卫生研究院;
关键词
CHRONIC KIDNEY-DISEASE; READABILITY; RISK; GWAS;
D O I
10.1038/s41431-023-01505-7
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
Genetic research presents numerous ethical, legal, and social implications (ELSI), particularly when the research involves collaborations between investigators in high and low-income countries. Some ELSI issues are universal, and others are specific to context and culture. This study investigates perceptions of genetic research in Nicaragua, Central America, where local and U.S. based researchers have collaborated for over a decade. A total of 43 residents from northwestern Nicaragua, a region with high mortality rates attributed to chronic kidney disease of non-traditional causes (CKDnt), were interviewed, including research participants in ongoing studies (n = 36), health professionals (n = 3), labor leaders (n = 2), and family members of research participants (n = 2). Questions focused on informed consent, data-sharing, and post-study expectations. Audio recordings of interviews conducted in Spanish were transcribed and translated into English. English transcripts were coded and analyzed using NVivo 12 software. The lack of familiarity with terms in the consent form presented a barrier to participant comprehension of key elements of the genetic research study, raising concerns about the validity of informed consent. Research participants often viewed their participation as access to health care. Health professionals emphasized the importance of long-term partnerships between foreign-based researchers and local health institutions. Leaders and family members recommended that they be informed of research studies and allowed the opportunity to consent, as they felt the benefits and risks of research also apply to them. Our findings identified genetic research practices to be improved upon in order to be more responsive to the contextual realities of collaborators living in low-resource settings.
引用
收藏
页码:1278 / 1284
页数:7
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