BRCA1/2 Variant Data-Sharing Practices

, , , &
Journal of Law, Medicine and Ethics 47 (1):88-96 (2019)
  Copy   BIBTEX

Abstract

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing global accesses to diverse data sets.

Categories

Keywords

Reprint years

DOI

10.1177/1073110519840487

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 92,168

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

My notes

Similar books and articles

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.
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.
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.
What Should Be the Data Sharing Policy of Cognitive Science?Mark A. Pitt & Yun Tang - 2013 - Topics in Cognitive Science 5 (1):214-221.
Challenges of web-based personal genomic data sharing.Pascal Borry & Mahsa Shabani - 2015 - Life Sciences, Society and Policy 11 (1):1-13.
Open Access Digital Data Sharing: Principles, Policies and Practices☆.Natasha Susan Mauthner & Odette Parry - 2013 - Social Epistemology 27 (1):47 - 67.
To share or not to share: Incentivizing data sharing in life science communities.Louise Bezuidenhout - 2018 - Developing World Bioethics 19 (1):18-24.
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.
Developing and Communicating Responsible Data Management Policies to Trainees and Colleagues.Julia Frugoli, Anne M. Etgen & Michael Kuhar - 2010 - Science and Engineering Ethics 16 (4):753-762.
Sharing Individual-Level Health Research Data: Experiences, Challenges and a Research Agenda.Phaik Yeong Cheah, Nicholas P. J. Day, Michael Parker & Susan Bull - 2017 - Asian Bioethics Review 9 (4):393-400.
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.
(Not) giving credit where credit is due: Citation of data sets. [REVIEW]Professor Joan E. Sieber & Bruce E. Trumbo - 1995 - Science and Engineering Ethics 1 (1):11-20.
Is There a Duty to Share? Ethics of Sharing Research Data in the Context of Public Health Emergencies.P. Langat, D. Pisartchik, D. Silva, C. Bernard, K. Olsen, M. Smith, S. Sahni & R. Upshur - 2011 - Public Health Ethics 4 (1):4-11.
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.

Analytics

Added to PP
2019-04-18

Downloads
14 (#993,927)

6 months
8 (#367,748)

Historical graph of downloads
How can I increase my downloads?

Citations of this work

Add more citations

References found in this work

Add more references