Literature DB >> 23325780

A solidarity-based approach to the governance of research biobanks.

Barbara Prainsack1, Alena Buyx.   

Abstract

New opportunities for large-scale data linkage and data-mining have rendered biobanks one of the core resources of medical research in the twenty-first century. At the same time, research biobanking has been seen to pose particular ethical and legal challenges pertaining to, for example, data protection, and the minimisation of other risks for participants. These measures have in turn led to heavy administrative, logistical, and financial costs and attracted criticism for unduly impeding disease research. Based on a newly formulated approach to solidarity, we propose an approach to governance that recognises people's willingness to participate in a public research biobank, and poses stronger emphasis on harm mitigation. We argue that such a model avoids some of the pitfalls of previous approaches. It also allows moving beyond overly restrictive and burdensome, exclusively autonomy-based governance towards governance that is reflective of people's willingness to accept costs to assist others.

Entities:  

Mesh:

Year:  2013        PMID: 23325780     DOI: 10.1093/medlaw/fws040

Source DB:  PubMed          Journal:  Med Law Rev        ISSN: 0967-0742            Impact factor:   1.267


  26 in total

1.  Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.

Authors:  Menno Mostert; Annelien L Bredenoord; Monique C I H Biesaart; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2015-11-11       Impact factor: 4.246

Review 2.  The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.

Authors:  Brent Daniel Mittelstadt; Luciano Floridi
Journal:  Sci Eng Ethics       Date:  2015-05-23       Impact factor: 3.525

Review 3.  Genetic research on biospecimens poses minimal risk.

Authors:  David S Wendler; Annette Rid
Journal:  Trends Genet       Date:  2014-12-16       Impact factor: 11.639

Review 4.  Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.

Authors:  Shuang Wang; Xiaoqian Jiang; Siddharth Singh; Rebecca Marmor; Luca Bonomi; Dov Fox; Michelle Dow; Lucila Ohno-Machado
Journal:  Ann N Y Acad Sci       Date:  2016-09-28       Impact factor: 5.691

5.  Motivations of participants in the citizen science of microbiomics: data from the British Gut Project.

Authors:  Lorenzo Del Savio; Barbara Prainsack; Alena Buyx
Journal:  Genet Med       Date:  2017-01-26       Impact factor: 8.822

6.  Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.

Authors:  Nchangwi Syntia Munung; Jantina de Vries; Bridget Pratt
Journal:  Med Health Care Philos       Date:  2021-04-02

7.  The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.

Authors:  Marina Mora; Corrado Angelini; Fabrizia Bignami; Anne-Mary Bodin; Marco Crimi; Jeanne-Hélène Di Donato; Alex Felice; Cécile Jaeger; Veronika Karcagi; Yann LeCam; Stephen Lynn; Marija Meznaric; Maurizio Moggio; Lucia Monaco; Luisa Politano; Manuel Posada de la Paz; Safaa Saker; Peter Schneiderat; Monica Ensini; Barbara Garavaglia; David Gurwitz; Diana Johnson; Francesco Muntoni; Jack Puymirat; Mojgan Reza; Thomas Voit; Chiara Baldo; Franca Dagna Bricarelli; Stefano Goldwurm; Giuseppe Merla; Elena Pegoraro; Alessandra Renieri; Kurt Zatloukal; Mirella Filocamo; Hanns Lochmüller
Journal:  Eur J Hum Genet       Date:  2014-12-24       Impact factor: 4.246

8.  Ethical issues in biomedical research using electronic health records: a systematic review.

Authors:  Jan Piasecki; Ewa Walkiewicz-Żarek; Justyna Figas-Skrzypulec; Anna Kordecka; Vilius Dranseika
Journal:  Med Health Care Philos       Date:  2021-06-19

9.  Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.

Authors:  Susan E Kelly; Timothy D Spector; Lynn F Cherkas; Barbara Prainsack; Juliette M Harris
Journal:  PLoS One       Date:  2015-03-11       Impact factor: 3.240

10.  What does engagement mean to participants in longitudinal cohort studies? A qualitative study.

Authors:  Cynthia A Ochieng; Joel T Minion; Andrew Turner; Mwenza Blell; Madeleine J Murtagh
Journal:  BMC Med Ethics       Date:  2021-06-24       Impact factor: 2.652

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