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)
Please use this url to cite or link to this publication:
https://lup.lub.lu.se/record/2966691
- author
- Hagen, Niclas
LU
; Hedlund, Maria
LU
; Lundin, Susanne
LU
; Mulinari, Shai
LU
and Kristoffersson, Ulf
LU
- organization
- publishing date
- 2012-07-25
- type
- Contribution to journal
- publication status
- published
- subject
- in
- Journal of Community Genetics
- publisher
- Springer
- external identifiers
-
- pmid:22829113
- scopus:84882942205
- pmid:22829113
- 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
- 2016-04-01 10:35:58
- date last changed
- 2022-01-26 00:45:12
@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 = {{https://lup.lub.lu.se/search/files/1976011/3436808.pdf}},
doi = {{10.1007/s12687-012-0109-x}},
year = {{2012}},
}