Critical illness research involving collection of genomic data: the conundrum posed by low levels of genomic literacy among surrogate decision makers for critically ill patients.
Critical illness clinical trials that entail genomic data collection pose unique challenges. In this qualitative study, we found that surrogate decision makers (SDMs) for critically ill individuals, such as those who would be approached for study participation, appeared to have a limited grasp of genomic principles. We argue that low levels of genomic literacy should neither preclude nor be in conflict with the conduct of ethically rigorous clinical trials.
Children's Hospital Los Angeles, Los Angeles, CA, USA.
Ellen
E
Iverson
Aaron
A
Celious
Erica
E
Shehane
Mandy
M
Oerke
Victoria
V
Warren
Alexander
A
Eastman
Carie R
CR
Kennedy
Bradley D
BD
Freeman
D035843:Biomedical Research / Q000941:ethics*; D016638:Critical Illness; D003657:Decision Making; D030661:Genetic Privacy; D016678:Genome; D057220:Health Literacy / Q000941:ethics*; D006801:Humans; D019727:Proxy; D020458:Third-Party Consent / Q000941:ethics*