TY - JOUR
T1 - Pragmatic tools for sharing genomic research results with the relatives of living and deceased research participants
AU - Wolf, Susan M
AU - Scholtes, Emily
AU - Koenig, Barbara A.
AU - Petersen, Gloria M.
AU - Berry, Susan A
AU - Beskow, Laura M.
AU - Daly, Mary B.
AU - Fernandez, Conrad V.
AU - Green, Robert C.
AU - LeRoy, Bonnie S
AU - Lindor, Noralane M.
AU - O’Rourke, Pearl
AU - Breitkopf, Carmen Radecki
AU - Rothstein, Mark A.
AU - Ness, Brian Van
AU - Wilfond, Benjamin S.
N1 - Publisher Copyright:
© 2018 The Author(s).
PY - 2018/3
Y1 - 2018/3
N2 - Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research (CSER) Consortium. The authors then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death.
AB - Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research (CSER) Consortium. The authors then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death.
UR - http://www.scopus.com/inward/record.url?scp=85055929734&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85055929734&partnerID=8YFLogxK
U2 - 10.1177/1073110518766024
DO - 10.1177/1073110518766024
M3 - Comment/debate
C2 - 30008546
AN - SCOPUS:85055929734
SN - 1073-1105
VL - 46
SP - 87
EP - 109
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1
ER -