Journal of Law, Medicine and Ethics 47 (1):31-40 (2019)
| Abstract |
Making data broadly accessible is essential to creating a medical information commons. 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.
|
| Keywords | No keywords specified (fix it) |
| Categories | (categorize this paper) |
| DOI | 10.1177/1073110519840482 |
| Options |
Mark as duplicate
Export citation
Request removal from index
|
Download options
References found in this work BETA
Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
The Role of Participants in a Medical Information Commons.Mary A. Majumder, Juli M. Bollinger, Angela G. Villanueva, Patricia A. Deverka & Barbara A. Koenig - 2019 - Journal of Law, Medicine and Ethics 47 (1):51-61.
Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
Citations of this work BETA
What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
Diversity, Profit, Control: An Empirical Study of Industry Employees’ Views on Ethics in Private Sector Genomics.Alexis Walker - forthcoming - AJOB Empirical Bioethics:1-13.
A Policy Delphi Study to Validate the Key Implications of Data Sharing (KIDS) Framework for Pediatric Genomics in Canada.Bartha Maria Knoppers, Gillian Bartlett & Vasiliki Rahimzadeh - 2021 - BMC Medical Ethics 22 (1):1-12.
Similar books and articles
Challenges of Web-Based Personal Genomic Data Sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
Ethical Concerns on Sharing Genomic Data Including Patients’ Family Members.Kyoko Takashima, Yuichi Maru, Seiichi Mori, Hiroyuki Mano, Tetsuo Noda & Kaori Muto - 2018 - BMC Medical Ethics 19 (1):61.
Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-Identification in Genomic Research.Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof Kalle & Eva Winkler - 2019 - Philosophy and Technology 32 (1):39-55.
Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-Identification in Genomic Research.Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof von Kalle & Eva C. Winkler - 2019 - Philosophy and Technology 32 (1):39-55.
Broad Data Sharing in Genetic Research: Views of Institutional Review Board Professionals.Amy Lemke, Maureen Smith, Wendy Wolf & Susan Trinidad - 2011 - IRB: Ethics & Human Research 33 (3):1-5.
BRCA1/2 Variant Data-Sharing Practices.Juli M. Bollinger, Abhi Sanka, Lena Dolman, Rachel G. Liao & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):88-96.
From Genomic Databases to Translation: A Call to Action.B. M. Knoppers, J. R. Harris, P. R. Burton, M. Murtagh, D. Cox, M. Deschenes, I. Fortier, T. J. Hudson, J. Kaye & K. Lindpaintner - 2011 - Journal of Medical Ethics 37 (8):515-516.
Hidden Concerns of Sharing Research Data by Low/Middle-Income Country Scientists.Louise Bezuidenhout & Ereck Chakauya - 2018 - Global Bioethics 29 (1):39-54.
Openness in the Social Sciences: Sharing Data.Joan E. Sieber - 1991 - Ethics and Behavior 1 (2):69 – 86.
Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework.Edward S. Dove - 2015 - Journal of Law, Medicine and Ethics 43 (4):675-689.
Ethical Sharing of Health Data in Online Platforms- Which Values Should Be Considered?Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo & Vojin Rakic - 2017 - Life Sciences, Society and Policy 13 (1):1-27.
What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
Sharing Data is a Shared Responsibility: Commentary On: “The Essential Nature of Sharing in Science”.Joe Giffels - 2010 - Science and Engineering Ethics 16 (4):801-803.
Analytics
Added to PP index
2019-04-18
Total views
20 ( #554,676 of 2,498,211 )
Recent downloads (6 months)
3 ( #212,239 of 2,498,211 )
2019-04-18
Total views
20 ( #554,676 of 2,498,211 )
Recent downloads (6 months)
3 ( #212,239 of 2,498,211 )
How can I increase my downloads?
Downloads
