Literature DB >> 26990222

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research.

Linus Johnsson, Stefan Eriksson.   

Abstract

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.
© 2016 John Wiley & Sons Ltd.

Entities:  

Keywords:  authority; autonomy; biobank research; dynamic consent; empowerment; informed consent; integrity

Mesh:

Year:  2016        PMID: 26990222     DOI: 10.1111/bioe.12254

Source DB:  PubMed          Journal:  Bioethics        ISSN: 0269-9702            Impact factor:   1.898


  4 in total

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

Authors:  Isabelle Budin-Ljøsne; Harriet J A Teare; Jane Kaye; Stephan Beck; Heidi Beate Bentzen; Luciana Caenazzo; Clive Collett; Flavio D'Abramo; Heike Felzmann; Teresa Finlay; Muhammad Kassim Javaid; Erica Jones; Višnja Katić; Amy Simpson; Deborah Mascalzoni
Journal:  BMC Med Ethics       Date:  2017-01-25       Impact factor: 2.652

Review 2.  Biobanking in health care: evolution and future directions.

Authors:  Luigi Coppola; Alessandra Cianflone; Anna Maria Grimaldi; Mariarosaria Incoronato; Paolo Bevilacqua; Francesco Messina; Simona Baselice; Andrea Soricelli; Peppino Mirabelli; Marco Salvatore
Journal:  J Transl Med       Date:  2019-05-22       Impact factor: 5.531

3.  Values and value conflicts in implementation and use of preconception expanded carrier screening - an expert interview study.

Authors:  Amal Matar; Mats G Hansson; Anna T Höglund
Journal:  BMC Med Ethics       Date:  2019-04-23       Impact factor: 2.652

4.  Dynamic consent and personalised medicine.

Authors:  Liza Goncharov; Hanna Suominen; Matthew Cook
Journal:  Med J Aust       Date:  2022-05-24       Impact factor: 12.776

  4 in total

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