| 1. |
- Johnsson, Linus, et al.
(author)
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Adequate trust avails, mistaken trust matters : On the moral responsibility of doctors as proxies for patients' trust in biobank research
- 2013
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In: Bioethics. - : Wiley. - 0269-9702 .- 1467-8519. ; 27:9, s. 485-492
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Journal article (peer-reviewed)abstract
- 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.
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| 2. |
- Johnsson, Linus, 1978-, et al.
(author)
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Hypothetical and factual willingness to participate in biobank research
- 2010
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In: European Journal of Human Genetics. - : Nature Publishing Group. - 1018-4813 .- 1476-5438. ; 18, s. 1261-1264
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Journal article (peer-reviewed)abstract
- In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.
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| 3. |
- Johnsson, Linus, 1978-, et al.
(author)
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Making researchers moral : Why trustworthiness requires more than ethics guidelines and review
- 2014
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In: Research Ethics. - : SAGE Publications. - 1747-0161 .- 2047-6094. ; 10:1, s. 29-46
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Journal article (peer-reviewed)abstract
- 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 (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized 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. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing.
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| 4. |
- Johnsson, Linus, 1978-
(author)
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Trust in Biobank Research : Meaning and Moral Significance
- 2013
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Doctoral thesis (other academic/artistic)abstract
- 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.
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| 5. |
- Rydberg, Tomas, et al.
(author)
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Biobaserade drivmedel: analys av potential, förutsättningar marknad, styrmedel och risker. möjligheter och risker - projektet BIODRIV. Slutrapport
- 2010
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Reports (other academic/artistic)abstract
- Projektet BIODRIV är en studie kring förutsättningar, möjligheter, begränsningar och risker på kort och lång sikt för svensk produktion av biodrivmedel med visst fokus på de produktionsförutsättningar som erbjuds genom svenska raffinaderier. Totalt har sex teknikspår för biodrivmedelsframställning identifierats som på sikt, helt eller delvis, kan ersätta dagens fossilt baserade bränslen inom transportsektorn. De sex teknikspåren är: 1) metan via gasnät, 2) decentraliserad pyrolys/förgasning, 3) olika resursbaser till fett, 4) vätgas, 5) metanol/DME, 6) elektricitet. För varje teknikspår har ett antal viktiga aspekter belysts: a) råvarutillgång, b) produktion, användning och distribution, c) aktörer, marknad och styrmedel, d) klimatvärdering och miljökonsekvenser, e) forskning och utveckling. Inledningsvis har vart och ett av teknikspåren studerats utifrån målbilden att leverera 25 TWh drivenergi år 2030. För flertalet av teknikspåren är detta möjligt med inhemsk råvaruförsörjning. Undantaget är fett och olja som råvarubas, där den inhemska försörjningsbasen är i storleksordningen 3-4 TWh. För övriga teknikspår kan 25 TWh helt eller delvis uppnås genom omvandling av skogsråvara till energibärare för fordonsdrift, via biomassaförgasning eller, i el-fallet, förbränning i elproducerande kraft(värme)verk
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