| 1. |
|
|
| 2. |
|
|
| 3. |
- Hedlund, Maria, et al.
(författare)
-
Democratic expert influence through bioethical advisory commissions? The case of Sweden
- 2010
-
Ingår i: Quality Issues in Clinical Genetic Services. - 9789048139187
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Bioethical government advisory committees have profound influence on political decision-making on gene technology issues, concerning not only patients with genetically related diseases, but also, potentially, the whole society. • Decision-making on issues concerning all society should be democratically legitimate in all aspects, including the work of government advisory committees. • Democratic legitimacy of expert advice is desirable not only for the democratic values per se, but also for the quality of political decisions. • In the case of PGD legislation in Sweden, the national government advisory committee functioned as a bridge between political representatives, specialist civil servants, and scientific experts, but the connection with public opinion was more or less absent. • Had the advisory committee worked more openly and allowed a multiplicity of perspectives being heard, the democratic and quality aspects in this legislation process would have been strengthened.
|
|
| 4. |
|
|
| 5. |
|
|
| 6. |
- Severin, Franziska, et al.
(författare)
-
Value judgments for priority setting criteria in genetic testing: A discrete choice experiment
- 2015
-
Ingår i: Health Policy. - : Elsevier BV. - 1872-6054 .- 0168-8510. ; 119:2, s. 164-173
-
Tidskriftsartikel (refereegranskat)abstract
- As our understanding of genetics has increased, so has the number of genetic tests that have entered clinical practice. Given the need of many European health care systems to contain costs, the question of how to prioritise genetic tests fairly has become an emerging concern. This study uses a discrete-choice experiment to assess the value judgements of clinical geneticists, patient representatives and other stakeholders regarding the prioritisation of genetic tests. The respondents chose between two hypothetical scenarios that differed in severity of the disease, risk of the disease, aim of the test, medical benefit of the test, and costs of the test. Standard logit models and mixed effects models were used to estimate the weights different stakeholders attached to attribute levels. Responses from 594 participants were analysed. The most highly valued attribute levels were a proven medical benefit of the test, high risk of having the disease and low costs of the test. Results also showed that rankings differ between clinical geneticists and other stakeholders. The priority weights determined within this study can inform the policy debate and improve the consistency of prioritisation in genetics. Further stakeholder deliberation is needed to explore their most appropriate use in decision practice.
|
|
