Literature DB >> 32571849

Pros and cons of prosent as an alternative to traditional consent in medical research.

Vasiliki Nataly Rahimzadeh1.   

Abstract

In their recent article, Porsdam Mann et al propose to share biomedical research data more widely, securely and efficiently using blockchain technologies.1 They present compelling arguments for how the blockchain presents both a technological innovation, and a deontologically grounded policy innovation to traditional research consent. Their proposal can be read in conversation with a rich body of evidence to suggest current consent processes are problematic on at least one of tripartite bases in biomedical research: that it be fully informed. This response attempts to further the author's discussion of social justice discourse in, and of their proposed prosent model to enhance engagement among under-represented and vulnerable populations in research, specifically. Motivating this response is the view that advancing technological capabilities is no doubt necessary, but on its own insufficient to reinvigorate distributive, procedural and social justice as guiding principles for con/prosent processes. I offer three pros and cons to consider in effort to deepen the model's commitments to social justice to historically marginalised groups in the biomedical research enterprise. © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.

Entities:  

Keywords:  confidentiality/privacy; information technology; informed consent; research ethics

Year:  2020        PMID: 32571849      PMCID: PMC7895339          DOI: 10.1136/medethics-2020-106443

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


  7 in total

1.  Power, rights, respect and data ownership in academic research with indigenous peoples.

Authors:  Susan Moodie
Journal:  Environ Res       Date:  2010-11       Impact factor: 6.498

2.  Blockchain protocols in clinical trials: Transparency and traceability of consent.

Authors:  Mehdi Benchoufi; Raphael Porcher; Philippe Ravaud
Journal:  F1000Res       Date:  2017-01-23

3.  Understanding the patient privacy perspective on health information exchange: A systematic review.

Authors:  Nelson Shen; Thérèse Bernier; Lydia Sequeira; John Strauss; Michelle Pannor Silver; Abigail Carter-Langford; David Wiljer
Journal:  Int J Med Inform       Date:  2019-02-01       Impact factor: 4.046

Review 4.  A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.

Authors:  Lea L Skovgaard; Sarah Wadmann; Klaus Hoeyer
Journal:  Health Policy       Date:  2019-03-21       Impact factor: 2.980

5.  Blockchain, consent and prosent for medical research.

Authors:  Sebastian Porsdam Mann; Julian Savulescu; Philippe Ravaud; Mehdi Benchoufi
Journal:  J Med Ethics       Date:  2020-05-04       Impact factor: 2.903

6.  Dynamic consent: a patient interface for twenty-first century research networks.

Authors:  Jane Kaye; Edgar A Whitley; David Lund; Michael Morrison; Harriet Teare; Karen Melham
Journal:  Eur J Hum Genet       Date:  2014-05-07       Impact factor: 4.246

Review 7.  Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.

Authors:  Shona Kalkman; Johannes van Delden; Amitava Banerjee; Benoît Tyl; Menno Mostert; Ghislaine van Thiel
Journal:  J Med Ethics       Date:  2019-11-12       Impact factor: 2.903

  7 in total

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