| Title | Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. |
| Publication Type | Journal Article |
| Year of Publication | 2019 |
| Authors | McGuire, AL, Majumder, MA, Villanueva, AG, Bardill, J, Bollinger, JM, Boerwinkle, E, Bubela, T, Deverka, PA, Evans, BJ, Garrison, N'A, Glazer, D, Goldstein, MM, Greely, HT, Kahn, SD, Knoppers, BM, Koenig, BA, J Lambright, M, Mattison, JE, O'Donnell, C, Rai, AK, Rodriguez, LL, Simoncelli, T, Terry, SF, Thorogood, AM, Watson, MS, Wilbanks, JT, Cook-Deegan, R |
| Journal | J Law Med Ethics |
| Volume | 47 |
| Issue | 1 |
| Pagination | 12-20 |
| Date Published | 2019 Mar |
| ISSN | 1748-720X |
| Keywords | Community Participation, Humans, Information Dissemination, Medical Informatics, Stakeholder Participation, Trust |
| Abstract | Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes. |
| DOI | 10.1177/1073110519840480 |
| Alternate Journal | J Law Med Ethics |
| PubMed ID | 30994067 |
| PubMed Central ID | PMC6738947 |
| Grant List | 141210 / / CIHR / Canada P20 HG007243 / HG / NHGRI NIH HHS / United States K01 HG008818 / HG / NHGRI NIH HHS / United States R01 HG008918 / HG / NHGRI NIH HHS / United States R01 CA237118 / CA / NCI NIH HHS / United States |