Literature DB >> 32098907

The 'Expiry Problem' of broad consent for biobank research - And why a meta consent model solves it.

Thomas Ploug1, Søren Holm2,3.   

Abstract

In this response to Neil Manson's latest intervention in our debate about the best consent model for biobank research we show, contra Manson that the 'expiry problem' that affects broad consent models because of changes over time in methods, purposes, types of data used and governance structures is a real and significant problem. We further show that our preferred implementation of meta consent as a national consent platform solves this problem and is not subject to the cost and burden objections that Manson raises. © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.

Keywords:  genetic information; informed consent; research ethics

Year:  2020        PMID: 32098907     DOI: 10.1136/medethics-2020-106117

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  5 in total

1.  Evaluating models of consent in changing health research environments.

Authors:  Svenja Wiertz; Joachim Boldt
Journal:  Med Health Care Philos       Date:  2022-03-14

2.  Ethical issues in bio-sample sharing among the public in Jordan.

Authors:  Lina M K Al-Ebbini; Omar F Khabour; Karem H Alzoubi; Almuthanna K Alkaraki
Journal:  Heliyon       Date:  2021-02-20

3.  Controversies between regulations of research ethics and protection of personal data: informed consent at a cross-road.

Authors:  Eugenijus Gefenas; J Lekstutiene; V Lukaseviciene; M Hartlev; M Mourby; K Ó Cathaoir
Journal:  Med Health Care Philos       Date:  2021-11-17

4.  In Defence of informed consent for health record research - why arguments from 'easy rescue', 'no harm' and 'consent bias' fail.

Authors:  Thomas Ploug
Journal:  BMC Med Ethics       Date:  2020-08-20       Impact factor: 2.652

5.  Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany.

Authors:  Gesine Richter; Christoph Borzikowsky; Wiebke Lesch; Sebastian C Semler; Eline M Bunnik; Alena Buyx; Michael Krawczak
Journal:  Eur J Hum Genet       Date:  2020-10-01       Impact factor: 5.351

  5 in total

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