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Making researchers moral: Why institutionalised distrust might not work
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
Stockholm Centre for Healthcare Ethics, Karolinska Institutet, Stockholm.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents, overseeing bodies, and formal procedures. The process of institutionalising distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure public trust. This paper examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalised distrust is a necessary or efficient means to prevent future ones; and there are several reasons to doubt that this is the case. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers—the kinds of qualities that institutionalised distrust calls into question. Third, ethics guidelines cannot, as it is sometimes assumed, educate or guide researchers to moral behaviour unless they already have considerable capacity for moral judgment. Fourth, institutionalised distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics as a pursuable activity. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences of allowing their moral competence to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and not obstructed from doing so.

Keyword [en]
research ethics; moral responsibility; ethics review; ethics guidelines; institutionalised distrust; scientific misconduct
National Category
Bioethics
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-192211OAI: oai:DiVA.org:uu-192211DiVA: diva2:589196
Available from: 2013-01-17 Created: 2013-01-17 Last updated: 2013-02-21
In thesis
1. Trust in Biobank Research: Meaning and Moral Significance
Open this publication in new window or tab >>Trust in Biobank Research: Meaning and Moral Significance
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility?

In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research.

Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2013. 142 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 861
Keyword
Biobank, biobank research, bioethics, biobank ethics, research ethics, trust, trustworthiness, moral responsibility, informed consent, ethics review, ethics guidelines
National Category
Bioethics
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-192295 (URN)978-91-554-8585-6 (ISBN)
Public defence
2013-03-09, Auditorium Minus, Museum Gustavianum, Akademigatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2013-02-15 Created: 2013-01-17 Last updated: 2013-04-02

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