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Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients' trust in biobank research
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.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2013 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 27, no 9, 485-492 p.Article in journal (Refereed) Published
Abstract [en]

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients’ trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients’ mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient’s reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good.

Place, publisher, year, edition, pages
2013. Vol. 27, no 9, 485-492 p.
Keyword [en]
biobank research, doctor-patient relationship, trust, therapeutic misconception
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-189860DOI: 10.1111/j.1467-8519.2012.01977.xISI: 000325867600003OAI: oai:DiVA.org:uu-189860DiVA: diva2:582497
Projects
Trust in biobank research
Available from: 2013-01-04 Created: 2013-01-04 Last updated: 2017-12-06
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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Publisher's full texthttp://dx.doi.org/10.1111/j.1467-8519.2012.01977.x

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Johnsson, LinusHansson, Mats G.Eriksson, Stefan

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