| 61. |
- Hansson, Mats G., et al.
(författare)
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Is medical ethics doing its job? : Introduction
- 2011
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Ingår i: Journal of Internal Medicine. - : Wiley. - 0954-6820 .- 1365-2796. ; 269:4, s. 366-369
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 62. |
- Hansson, Mats G, et al.
(författare)
-
Medical registries represent vital patient interests and should not be dismantled by stricter regulation
- 2012
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Ingår i: Cancer Epidemiology. - : Elsevier BV. - 1877-7821 .- 1877-783X. ; 36:6, s. 575-578
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Tidskriftsartikel (refereegranskat)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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| 63. |
- Hansson, Mats G., et al.
(författare)
-
MIND THE RISK · DEN GENETISKA RISKINFORMATIONENS ETIK FÖR INDIVID OCH SAMHÄLLE : SLUTRAPPORT FRÅN ETT FORSKNINGSPROGRAM
- 2019
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Bok (populärvet., debatt m.m.)abstract
- Forskningsprogrammet "Mind the risk: Den genetiska riskinformationens etik för individ och samhälle" tilldelades anslag från Stiftelsen Riksbankens Jubileumsfond 2013. Målet var att analysera etiska aspekter av genetisk riskinformation inom vården: ett fält som på senare år utvecklats i rasande takt. I dag kan både enskilda och sjukvården ta reda på genetiska risker och förutsättningar. Forskare från flera länder har inom programmet analyserat debatten och hur patienter, sjukvårdspersonal och anhöriga ser på etiska dilemman inom den nya genetiska medicinen. Detta är programmets slutrapport.
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| 64. |
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| 65. |
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| 66. |
- Hansson, Mats G, et al.
(författare)
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Should donors be allowed to give broad consent to future biobank research?
- 2006
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Ingår i: The Lancet Oncology. - 1474-5488 .- 1470-2045. ; 7:3, s. 266-9
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Tidskriftsartikel (refereegranskat)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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| 67. |
- Hansson, Mats G.
(författare)
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Taking the patient's side : the ethics of pharmacogenetics
- 2010
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Ingår i: Personalized Medicine. - : Future Medicine Ltd. - 1741-0541 .- 1744-828X. ; 7:1, s. 75-85
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Tidskriftsartikel (refereegranskat)abstract
- From the perspective of current and future patients, the development of the field of pharmacogenetics is of immense interest. The encouraging vision that is now being established is that we may move from trial and error therapies to evidence-based personalized medicine in clinical practice. However, research and the application of pharmacogenetics to clinical practice are believed to raise a host of controversial ethical issues. Some of these are related to the research process, for example, confidentiality and informed consent in association with human tissue sampling. Other issues arise on a societal level, for example, issues regarding justice and the use of race or ethnicity as proxies for genotyping. in this perspective, I comment on this debate and also suggest what we may learn from previous discussions regarding DNA testing and gene transfer methods. Arguably, the most important ethical perspective in medical research and drug development is related to the interests of patients wanting medical treatment that is both effective and carries low risks of adverse effects. Risk:benefit ratios must always be compared with existing alternatives, and while the risk of adverse effects may be tolerable for some individuals, owing to genetic reasons, this may not be relevant for others. This will have consequences for regulatory policies regarding drug development. In the future, personalized medicine will also need to take epigenetic and environmental factors into consideration.
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| 68. |
- Hansson, Mats G
(författare)
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The ethics of PGD-regulation
- 2005
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Ingår i: PGD and embryo selection. - Copenhagen : Nordic Council of Ministers. - 9289312599 ; , s. 82-92
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Konferensbidrag (refereegranskat)
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| 69. |
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| 70. |
- Hansson, Mats G., et al.
(författare)
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The risk of re-identification versus the need to identify individuals in rare disease research
- 2016
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Ingår i: European Journal of Human Genetics. - : Springer Science and Business Media LLC. - 1018-4813 .- 1476-5438. ; 24:11, s. 1553-1558
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Tidskriftsartikel (refereegranskat)abstract
- There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers.
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