TY - JOUR
T1 - Ethical implications of including children in a large biobank for genetic-epidemiologic research
T2 - A qualitative study of public opinion
AU - Kaufman, David
AU - Geller, Gail
AU - Leroy, Lisa
AU - Murphy, Juli
AU - Scott, Joan
AU - Hudson, Kathy
PY - 2008/2/15
Y1 - 2008/2/15
N2 - The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The pilot included 15 focus groups where the inclusion of children in the proposed cohort study was discussed. Focus groups, conducted in six cities, included 141 adults of different ages, incomes, genders, ethnicities, and races. Many of the concerns expressed by participants mirrored those addressed in pediatric research guidelines. These concerns included minimizing children's fear, pain, and burdens; whether to include young children; and how to obtain children's assent. There was little agreement about which children can assent. Some voiced concern about children's privacy, but most expected that parents would have access to children's study results. Some believed children would not benefit from participating, while others identified personal and societal benefits that might accrue. A few people believed that children's participation would not advance the study's goals. To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent.
AB - The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. The pilot included 15 focus groups where the inclusion of children in the proposed cohort study was discussed. Focus groups, conducted in six cities, included 141 adults of different ages, incomes, genders, ethnicities, and races. Many of the concerns expressed by participants mirrored those addressed in pediatric research guidelines. These concerns included minimizing children's fear, pain, and burdens; whether to include young children; and how to obtain children's assent. There was little agreement about which children can assent. Some voiced concern about children's privacy, but most expected that parents would have access to children's study results. Some believed children would not benefit from participating, while others identified personal and societal benefits that might accrue. A few people believed that children's participation would not advance the study's goals. To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent.
KW - Children
KW - Cohort study
KW - Community engagement
KW - Focus groups
KW - Genetics
KW - Public opinion
UR - http://www.scopus.com/inward/record.url?scp=39749108755&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=39749108755&partnerID=8YFLogxK
U2 - 10.1002/ajmg.c.30159
DO - 10.1002/ajmg.c.30159
M3 - Article
C2 - 18189289
AN - SCOPUS:39749108755
SN - 1552-4868
VL - 148
SP - 31
EP - 39
JO - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
JF - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics
IS - 1
ER -