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- Engström, Gunnar, et al.
(author)
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The Swedish CArdioPulmonary BioImage Study : objectives and design
- 2015
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In: Journal of Internal Medicine. - : Wiley. - 0954-6820 .- 1365-2796. ; 278:6, s. 645-659
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Journal article (peer-reviewed)abstract
- Cardiopulmonary diseases are major causes of death worldwide, but currently recommended strategies for diagnosis and prevention may be outdated because of recent changes in risk factor patterns. The Swedish CArdioPulmonarybioImage Study (SCAPIS) combines the use of new imaging technologies, advances in large-scale 'omics' and epidemiological analyses to extensively characterize a Swedish cohort of 30 000 men and women aged between 50 and 64 years. The information obtained will be used to improve risk prediction of cardiopulmonary diseases and optimize the ability to study disease mechanisms. A comprehensive pilot study in 1111 individuals, which was completed in 2012, demonstrated the feasibility and financial and ethical consequences of SCAPIS. Recruitment to the national, multicentre study has recently started.
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- Hansson, Mats G., et al.
(author)
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Commentary: Isolated Stem Cells - Patentable as Cultural Artifacts?
- 2007
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In: Stem Cells. - : Oxford University Press (OUP). - 1066-5099 .- 1549-4918. ; 25:6, s. 1507-1510
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Journal article (peer-reviewed)abstract
- This article argues that an isolated embryonic stem cell basically represents a cultural artifact that has no equivalent to cells of the embryo, and that it is likely that the isolation of adult stem cells has a similar consequence. An isolated stem cell could thus be distinguished as something other than the stem cell existing as part of a human body. Since isolation of stem cells implies modification, product patents should, where the results carry enough novelty, inventive step, and potential for industrial application, as a matter of principle be a viable option for patent authorities. Questions of morality, which may affect the patentability, should also be viewed in light of the distinction between isolated result and body part. At the same time, it is essential that patent authorities do not accept broad patent claims that will be detrimental to research. Disclosure of potential conflicts of interest is found at the end of this article.
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- Hansson, Mats G, et al.
(author)
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Medical registries represent vital patient interests and should not be dismantled by stricter regulation
- 2012
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In: Cancer Epidemiology. - : Elsevier BV. - 1877-7821 .- 1877-783X. ; 36:6, s. 575-578
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Journal article (peer-reviewed)abstract
- BACKGROUND:Medical registries serve patients as beneficiaries of quality standards and new treatment opportunities. However, it has been argued that registries threaten patient privacy interests and should therefore be more strictly regulated.METHODS AND RESULTS:With the European Treatment and Outcome Study for Chronic Myeloid Leukemia as a concrete example we identify and describe how four of the major arguments put forward for stricter regulation fail.CONCLUSION:We conclude that medical registries should be promoted both for research and quality control, and that the regulatory bureaucratic burden should be reduced.
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- Hansson, Mats G, et al.
(author)
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Should donors be allowed to give broad consent to future biobank research?
- 2006
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In: The Lancet Oncology. - 1474-5488 .- 1470-2045. ; 7:3, s. 266-9
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Journal article (peer-reviewed)abstract
- Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. in this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.
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| 9. |
- Helgesson, Gert, et al.
(author)
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Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial
- 2009
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In: Pediatric Diabetes. - : Hindawi Limited. - 1399-543X .- 1399-5448. ; 10:6, s. 408-412
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Journal article (peer-reviewed)abstract
- Objective: The objective of this study was to investigate the importance of trust in researchers and other reasons that participating parents, former participants, and non-participants had for participating, or not participating, in a longitudinal cohort study on prediction and development of diabetes in children. Study design: A questionnaire addressing each of these groups, where respondents graded the importance of a set of listed reasons for participating/not participating, was randomly distributed to 2500 families in the All Babies in Southeast Sweden (ABIS) study region with children born between 1997 and 1999. Results: Lack of trust was not a central factor to a great majority of respondents who decided not to participate in the ABIS study or who later decided to opt out. Practical matters, like blood sampling and lack of time, were important factors to many more. Yet, four fifths of those who still participate in the ABIS study stated trust in the researchers to be an important factor to their initial decision to participate. Conclusions: Trust in researchers may be a necessary prerequisite in order for people to be willing to participate in research, but practical matters such as time that has to be spent or pain involved in collecting blood were more important factors than lack of trust in explaining opt out in relation to the ABIS study.
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- Hultman, Christina M, et al.
(author)
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Ethical Issues in Cancer Register Follow-Up of Hormone Treatment in Adolescence
- 2009
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In: Public Health Ethics. - : Oxford University Press (OUP). - 1754-9973 .- 1754-9981. ; 2:1, s. 30-36
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Journal article (peer-reviewed)abstract
- Since the 1970s, estrogen have sometimes been used in adolescent girls to reduce very tall adult expected height.Worries about long-term effects have led to a proposal to link treatment data with cancer registers. How shouldone deal with informed consent for such a study?We designed a qualitative study with semi-structured telephoneinterviews. From 1200 women who were to be followed-up in cancer registers, we randomly selected 22 women.Major themes were a wish to be involved and a positive attitude to the proposed register research. The womendid not express worry after reading the study protocol, but did convey considerable frustration that this researchhad not been initiated earlier. Active consent was not seen as crucial. We found strong interest in a high participationrate and a concern over missing data. The selection of information and consent or the decision to goahead without consent in register follow-up is a delicate balancing act. Study participants wish to be contacted,but acknowledge the primary goal of answering important questions. Our study provides support for safeguardingprivacy in epidemiological linkage studies and in follow-up of medical treatment without losing the scientificvalue by requesting for informed consent.
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