Community engagement and informed consent in the International HapMap project.
The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
Rotimi
Charles
C
National Human Genome Center, Howard University, Washington, DC, USA.
Leppert
Mark
M
Matsuda
Ichiro
I
Zeng
Changqing
C
Zhang
Houcan
H
Adebamowo
Clement
C
Ajayi
Ike
I
Aniagwu
Toyin
T
Dixon
Missy
M
Fukushima
Yoshimitsu
Y
Macer
Darryl
D
Marshall
Patricia
P
Nkwodimmah
Chibuzor
C
Peiffer
Andy
A
Royal
Charmaine
C
Suda
Eiko
E
Zhao
Hui
H
Wang
Vivian Ota
VO
McEwen
Jean
J
D000328:Adult; D002648:Child; D002874:Chromosome Mapping; D005260:Female; D014644:Genetic Variation; D005828:Genetics, Population; D016045:Human Genome Project; D006801:Humans; D007258:Informed Consent; D007391:International Cooperation; D008297:Male; D010290:Parents