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| 2. |
- Johnsson, Linus, et al.
(författare)
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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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Ingår i: Bioethics. - : Wiley. - 0269-9702 .- 1467-8519. ; 27:9, s. 485-492
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Tidskriftsartikel (refereegranskat)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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| 3. |
- Johnsson, Linus, et al.
(författare)
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Patients' refusal to consent to storage and use of samples in Swedish biobanks : cross sectional study
- 2008
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Ingår i: BMJ. British Medical Journal. - : BMJ. - 0959-8146 .- 0959-535X. ; 337:7663, s. a345-
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesTo estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent.DesignCross sectional study of register data.SettingBiobanks used in Swedish health care, 2005-6.PopulationData on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties.Main outcome measuresRates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent.ResultsPatients refused consent to either storage or use of their samples in about 1 in 690 cases, about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19 000 withdrew their consent.ConclusionsRefusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and tack of consent to research is used as the default position. A system of presumed consent with straightforward opt out;would correspond with people's attitudes, as expressed in their actions, towards biobank research.
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| 4. |
- Stjernschantz Forsberg, Joanna, 1972-, et al.
(författare)
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Biobank research : who benefits from individual consent?
- 2011
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Ingår i: The BMJ. - : BMJ. - 1756-1833. ; 343:Oct 4, s. d5647-
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Tidskriftsartikel (refereegranskat)abstract
- Requiring informed consent for research on stored tissue samples and associated data safeguards the autonomy rights of donors. But Joanna Stjernschantz Forsberg, Mats Hansson, and Stefan Eriksson argue that this policy not only defeats the interest of society but also runs counter to the interests of the individuals it purports to protect.
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| 5. |
- Stjernschantz Forsberg, Joanna, 1972-, et al.
(författare)
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Changing perspectives in biobank research : from individual rights to concerns about public health regarding the return of results
- 2009
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Ingår i: European Journal of Human Genetics. - : Springer Science and Business Media LLC. - 1018-4813 .- 1476-5438. ; 17:12, s. 1544-1549
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Tidskriftsartikel (refereegranskat)abstract
- During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.
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| 6. |
- Stjernschantz Forsberg, Joanna, et al.
(författare)
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The Risks and Benefits of Re-Consent
- 2011
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Ingår i: Science. - 0036-8075 .- 1095-9203. ; 332:6027, s. 306-306
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Tidskriftsartikel (refereegranskat)
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