TY - JOUR
T1 - Forbidden knowledge
T2 - A case study with commentaries exploring ethical issues and genetic research
AU - Schrag, Brian
AU - Love-Gregory, Latisha
AU - Muskavitch, Karen M.T.
AU - McCafferty, Jennifer
PY - 2003/7/1
Y1 - 2003/7/1
N2 - This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers' responsibilities to the community as a whole and to individual subjects; of the impact of the researcher's findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.
AB - This case is part of a series of case studies used as an exercise within a program on research ethics education. The case involves research on genetic birth defects in a culturally distinct, closed religious community in which elders speak for the community. The case raises ethical issues of informed consent in such a setting; of collaboration with the community; of conflicts between the researchers' responsibilities to the community as a whole and to individual subjects; of the impact of the researcher's findings on the practices and values of the community and issues regarding how the researchers share findings with subjects and how the findings are stored.
KW - Cases
KW - Community collaboration
KW - Education
KW - Ethics
KW - Genetic research
KW - Informed consent
UR - https://www.scopus.com/pages/publications/0141799743
M3 - Article
C2 - 12971301
AN - SCOPUS:0141799743
SN - 1353-3452
VL - 9
SP - 409
EP - 416
JO - Science and Engineering Ethics
JF - Science and Engineering Ethics
IS - 3
ER -