TY - JOUR
T1 - Hopeful and Concerned
T2 - Public Input on Building a Trustworthy Medical Information Commons
AU - Deverka, Patricia A.
AU - Gilmore, Dierdre
AU - Richmond, Jennifer
AU - Smith, Zachary
AU - Mangrum, Rikki
AU - Koenig, Barbara A.
AU - Cook-Deegan, Robert
AU - Villanueva, Angela G.
AU - Majumder, Mary A.
AU - McGuire, Amy L.
N1 - Publisher Copyright:
© 2019 American Society of Law, Medicine & Ethics.
PY - 2019/3/1
Y1 - 2019/3/1
N2 - A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
AB - A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
UR - http://www.scopus.com/inward/record.url?scp=85064982752&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85064982752&partnerID=8YFLogxK
U2 - 10.1177/1073110519840486
DO - 10.1177/1073110519840486
M3 - Article
C2 - 30994071
AN - SCOPUS:85064982752
SN - 1073-1105
VL - 47
SP - 70
EP - 87
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1
ER -