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Sökning: WFRF:(Lundin Susanne) > Hagen Niclas

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1.
  • Hagen, Niclas, et al. (författare)
  • Genetics and democracy-what is the issue?
  • 2012
  • Ingår i: Journal of Community Genetics. - : Springer Science and Business Media LLC. - 1868-6001 .- 1868-310X.
  • Tidskriftsartikel (refereegranskat)abstract
    • Current developments in genetics and genomics entail a number of changes and challenges for society as new knowledge and technology become common in the clinical setting and in society at large. The relationship between genetics and ethics has been much discussed during the last decade, while the relationship between genetics and the political arena-with terms such as rights, distribution, expertise, participation and democracy-has been less considered. The purpose of this article is to demonstrate the connection between genetics and democracy. In order to do this, we delineate a notion of democracy that incorporates process as well as substance values. On the basis of this notion of democracy and on claims of democratisation in the science and technology literature, we argue for the importance of considering genetic issues in a democratic manner. Having established this connection between genetics and democracy, we discuss this relation in three different contexts where the relationship between genetics and democracy becomes truly salient: the role of expertise, science and public participation, and individual responsibility and distributive justice. As developments within genetics and genomics advance with great speed, the importance and use of genetic knowledge within society can be expected to grow. However, this expanding societal importance of genetics might ultimately involve, interact with, or even confront important aspects within democratic rule and democratic decision-making. Moreover, we argue that the societal importance of genetic development makes it crucial to consider not only decision-making processes, but also the policy outcomes of these processes. This argument supports our process and substance notion of democracy, which implies that public participation, as a process value, must be complemented with a focus on the effects of policy decisions on democratic values such as distributive justice.
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3.
  • Petersen, Marsanna, et al. (författare)
  • Clinical experiments for Huntington's disease : Recommendations to medical researchers regarding how to inform potential participants
  • 2016
  • Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
    • Huntington's disease (HD) is a severe, genetic brain disorder that causes great suffering and leads to an early death. The medical research team in the project Treatments of the Future at Lund University aims to develop a new molecular gene therapeutic method that will give the possibility to cure the disease. The authors’, social- and cultural scientists, mission is to develop recommendations for how information should be designed to potential research subjects in an experimental gene therapy study regarding HD. More specifically, to find and recommend a model that makes it possible for individuals who are affected by HD to decide if they want to participate as research subjects in the clinical trials within Treatments of the Future.
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4.
  • Wiszmeg, Andréa, et al. (författare)
  • Difficult Questions and Ambivalent Answers on Genetic Testing
  • 2012
  • Ingår i: Culture Unbound. Journal of Current Cultural Research. - : Linkoping University Electronic Press. - 2000-1525. ; 4, s. 463-480
  • Tidskriftsartikel (refereegranskat)abstract
    • A qualitative pilot study on the attitudes of some citizens in southern Sweden toward predictive genetic testing – and a quantitative nation wide opinion poll targeting the same issues, was initiated by the Cultural Scientific Research Team of BAGADILICO. The latter is an international biomedical research environment on neurological disease at Lund University. The data of the two studies crystallized through analysis into themes around which the informants’ personal negotiations of opinions and emotions in relation to the topic centred: Concept of Risk,‘Relations and Moral Multi-layers, Worry, Agency and Autonomy, Authority, and Rationality versus Emotion. The studies indicate that even groups of people that beforehand are non-engaged in the issue, harbour complex and ambivalent emotions and opinions toward questions like this. A certain kind of situation bound pragmatism that with difficulty could be shown by quantitative methods alone emerges. This confirms our belief that methodological consideration of combining quantitative and qualitative methods is crucial for gaining a more complex representation of attitudes, as well as for problematizing the idea of a unified public open to inquiry.
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