The Journal of law, medicine & ethics, 2019-03, Vol.47 (1), p.31-40
2019
Details
- Autor(en) / Beteiligte
- Titel
- Genomic Data-Sharing Practices
- Ist Teil von
- The Journal of law, medicine & ethics, 2019-03, Vol.47 (1), p.31-40
- Ort / Verlag
- Los Angeles, CA: SAGE Publications
- Erscheinungsjahr
- 2019
- Link zum Volltext
- Quelle
- Nexis
- Beschreibungen/Notizen
- Making data broadly accessible is essential to creating a medical information commons (MIC). Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
- Sprache
- Englisch
- Identifikatoren
- ISSN: 1073-1105eISSN: 1748-720XDOI: 10.1177/1073110519840482Titel-ID: cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_6730666
- Format
- –
- Schlagworte
- Confidentiality, Consent, Data, Data collection, Databases, Genetic - ethics, Datasets, Funding, Humans, Information dissemination, Information Dissemination - ethics, Information sharing, Informed Consent, Nonprofit organizations, Patient Participation, Precision medicine, Privacy, Transparency, Websites