How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity

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Abstract

The article discusses the impact different concepts of solidarity can have on debates on models of consent for non-interventional research. It introduces three concepts of solidarity that have been referenced in bioethical debates: a purely descriptive concept, a concept that claims some derivative value for most but not all practices of solidarity, as well as a clearly normative concept where solidarity is tied to justice and taken to ground moral duties. It shows that regarding the rivalling models of study-specific consent, tiered consent and broad consent, the first two concepts can be taken to favour tiered consent while only normative solidarity supports a model of broad consent—or an argument to allow non-interventional research without requiring consent at all. As normative solidarity is tied to considerations of justice, however, the argument appears less straightforward than one might expect: It presupposes that the research contributes to overcoming existing social injustices.

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Should donors be allowed to give broad consent to future biobank research?

Joakim Dillner, Gert Helgesson, Mats Hansson … (2006)

Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. In this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.

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Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye … (2017)

Background Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment. Methods An interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach. Results Dynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies. Conclusions Dynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.

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Solidarity in Biomedicine and Beyond

Barbara Prainsack, Alena Buyx (2017)

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Author and article information

Journal

Journal ID (nlm-ta): Public Health Ethics

Journal ID (iso-abbrev): Public Health Ethics

Journal ID (publisher-id): phe

Title: Public Health Ethics

Publisher: Oxford University Press (UK )

ISSN (Print): 1754-9973

ISSN (Electronic): 1754-9981

Publication date Collection: November 2023

Publication date (Electronic): 12 December 2023

Publication date PMC-release: 12 December 2023

Volume: 16

Issue: 3

Pages: 261-270

Author notes

Department of Medical Ethics and the History of Medicine, University of Freiburg, 79104 Freiburg, Germany. Tel.: +49 (0)761/203-5044; Fax: +49 (0)761/203-5039; Email: wiertz@ 123456egm.uni-freiburg.de

Author information

Svenja Wiertz https://orcid.org/0000-0001-5255-7933

Article

Publisher ID: phad025

DOI: 10.1093/phe/phad025

PMC ID: 10849178

PubMed ID: 38333768

SO-VID: a5e0af40-c877-4aa3-8f4e-23d49adce5ff

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License ( https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com

History

Date received : 29 November 2022

Page count

Pages: 10

Funding

Funded by: Bundesministerium für Bildung und Forschung, DOI 10.13039/501100002347;

Award ID: 01GP1902A

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