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On the need for improved protections of incapacitated and non-benefitting research subjects
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2012 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 26, no 1, 15-21 p.Article in journal (Refereed) Published
Abstract [en]

In this article, it is claimed that the protective provisions for adults with impaired decision-making capacity are misguided, insofar as they do not conclusively state whether research on this group should be permitted only as an exception, and as they arbitrarily allow for some groups to benefit from such research while others will not. Moreover, the presumed or former will of the subject is given insufficient weight, and the minimal risk standard does not make sense in this context.

Because of these problems, the present guidelines allow for the possibility of vulnerable people being exploited, something that is hidden behind a guise of solidarity. Instead we need to address the real issues at stake by rewriting the present statutes.

It is suggested that new guidelines should be in some continuity with earlier efforts. However, in order to protect these subjects there is additional need for appointed representatives who monitor research and for legal obligations to compensate for any injuries suffered.

Without these or similar measures we won’t have an adequate system in place for the protection of non-benefiting persons who are unable to consent to research.

Place, publisher, year, edition, pages
2012. Vol. 26, no 1, 15-21 p.
National Category
Research subject
URN: urn:nbn:se:uu:diva-141302DOI: 10.1111/j.1467-8519.2010.01804.xISI: 000298063700004OAI: oai:DiVA.org:uu-141302DiVA: diva2:385384
Available from: 2011-01-11 Created: 2011-01-11 Last updated: 2012-01-25Bibliographically approved

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