Literature DB >> 27256132

Comparative Approaches to Biobanks and Privacy.

Mark A Rothstein1, Bartha Maria Knoppers1, Heather L Harrell1.   

Abstract

Laws in the 20 jurisdictions studied for this project display many similar approaches to protecting privacy in biobank research. Although few have enacted biobank-specific legislation, many countries address biobanking within other laws. All provide for some oversight mechanisms for biobank research, even though the nature of that oversight varies between jurisdictions. Most have some sort of controlled access system in place for research with biobank specimens. While broad consent models facilitate biobanking, countries without national or federated biobanks have been slow to adopt broad consent. International guidelines have facilitated sharing and generally take a proportional risk approach, but many countries have provisions guiding international sharing and a few even limit international sharing. Although privacy laws may not prohibit international collaborations, the multi-prong approach to privacy unique to each jurisdiction can complicate international sharing. These symposium issues can serve as a resource for explaining the sometimes intricate privacy laws in each studied jurisdiction, outlining the key issues with regards to privacy and biobanking, and serving to describe a framework for the process of harmonization of privacy laws.
© 2016 American Society of Law, Medicine & Ethics.

Mesh:

Year:  2016        PMID: 27256132     DOI: 10.1177/1073110516644207

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  6 in total

Review 1.  Regulations and Norms for Reuse of Residual Clinical Biospecimens and Health Data.

Authors:  Elizabeth E Umberfield; Sharon L R Kardia; Yun Jiang; Andrea K Thomer; Marcelline R Harris
Journal:  West J Nurs Res       Date:  2021-07-08       Impact factor: 1.774

2.  Beyond Our Borders? Public Resistance to Global Genomic Data Sharing.

Authors:  Mary A Majumder; Robert Cook-Deegan; Amy L McGuire
Journal:  PLoS Biol       Date:  2016-11-02       Impact factor: 8.029

Review 3.  Consent, ethics and genetic biobanks: the case of the Athlome project.

Authors:  Rachel Thompson; Michael J McNamee
Journal:  BMC Genomics       Date:  2017-11-14       Impact factor: 3.969

4.  Open sharing of genomic data: Who does it and why?

Authors:  Tobias Haeusermann; Bastian Greshake; Alessandro Blasimme; Darja Irdam; Martin Richards; Effy Vayena
Journal:  PLoS One       Date:  2017-05-09       Impact factor: 3.240

5.  Return of individual genomic research results: are laws and policies keeping step?

Authors:  Adrian Thorogood; Gratien Dalpé; Bartha Maria Knoppers
Journal:  Eur J Hum Genet       Date:  2019-01-08       Impact factor: 4.246

6.  Context-Relative Norms Determine the Appropriate Type of Consent in Clinical Biobanks: Towards a Potential Solution for the Discrepancy between the General Data Protection Regulation and the European Data Protection Board on Requirements for Consent.

Authors:  R Indrakusuma; S Kalkman; M J W Koelemay; R Balm; D L Willems
Journal:  Sci Eng Ethics       Date:  2020-10-13       Impact factor: 3.525

  6 in total

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