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Genetics and democracy-what is the issue?

Hagen, Niclas LU ; Hedlund, Maria LU ; Lundin, Susanne LU ; Mulinari, Shai LU and Kristoffersson, Ulf LU (2012) In Journal of Community Genetics
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... (More)
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. (Less)
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organization
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Contribution to journal
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published
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in
Journal of Community Genetics
publisher
Springer
external identifiers
  • pmid:22829113
  • scopus:84882942205
ISSN
1868-6001
DOI
10.1007/s12687-012-0109-x
language
English
LU publication?
yes
id
0821bd62-0fb4-43d2-a826-2465c899b75b (old id 2966691)
alternative location
http://www.ncbi.nlm.nih.gov/pubmed/22829113?dopt=Abstract
date added to LUP
2012-08-10 08:27:11
date last changed
2017-08-13 03:15:58
@article{0821bd62-0fb4-43d2-a826-2465c899b75b,
  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.},
  author       = {Hagen, Niclas and Hedlund, Maria and Lundin, Susanne and Mulinari, Shai and Kristoffersson, Ulf},
  issn         = {1868-6001},
  language     = {eng},
  month        = {07},
  publisher    = {Springer},
  series       = {Journal of Community Genetics},
  title        = {Genetics and democracy-what is the issue?},
  url          = {http://dx.doi.org/10.1007/s12687-012-0109-x},
  year         = {2012},
}