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Provision of genetic services in Europe: current practices and issues

Godard, B; Kaariainen, H; Kristoffersson, Ulf LU ; Tranebjaerg, L; Coviello, D and Ayme, S (2003) In European Journal of Human Genetics 11. p.13-48
Abstract
This paper examines the professional and scientific views on the social, ethical and legal issues that impact on the provision of genetic services in Europe. Many aspects have been considered, such as the definition and the aims of genetic services, their organization, the quality assessment, public education, as well as the partnership with patients support groups and the multicultural aspects. The methods was primarily the analysis of professional guidelines, legal frameworks and other documents related to the organization of genetic services, mainly from Europe, but also from USA and international organizations. Then, the method was to examine the background data emerging from an updated report produced by the Concerted Action on... (More)
This paper examines the professional and scientific views on the social, ethical and legal issues that impact on the provision of genetic services in Europe. Many aspects have been considered, such as the definition and the aims of genetic services, their organization, the quality assessment, public education, as well as the partnership with patients support groups and the multicultural aspects. The methods was primarily the analysis of professional guidelines, legal frameworks and other documents related to the organization of genetic services, mainly from Europe, but also from USA and international organizations. Then, the method was to examine the background data emerging from an updated report produced by the Concerted Action on Genetic Services in Europe, as well as the issues debated by 43 experts from 17 European countries invited to an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Helsinki, Finland, 8 and 9 September 2000. Some conclusions were identified from the ESHG workshop to arrive at outlines for optimal genetic services. Participants were concerned about equal accessibility and effectiveness of clinical genetic services, quality assessment of services, professional education, multidisciplinarity and division of tasks as well as networking. Within European countries, adherance to the organizational principles of prioritization, regionalization and integration into related health services would maximize equal accessibility and effectiveness of genetic actions. There is a need for harmonization of the rules involved in financial coverage of DNA tests in order to make these available to all Europeans. Clear guidelines for the best practice will ensure that the provision of genetic services develops in a way that is beneficial to its customers, be they health professionals or the public, especially since the coordination of clinical, laboratory and research perspectives within a single organizational structure permits a degree of coherence not often found in other specialties. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
quality control, genetic testing, genetic services, counselling, genetic counselling, Europe
in
European Journal of Human Genetics
volume
11
pages
13 - 48
publisher
Nature Publishing Group
external identifiers
  • wos:000188098400006
  • scopus:1342324895
ISSN
1476-5438
DOI
language
English
LU publication?
yes
id
4d3ac8d5-cf0e-4f5b-be06-e67195b6e3dd (old id 289774)
date added to LUP
2007-09-03 11:18:02
date last changed
2018-05-29 10:41:48
@article{4d3ac8d5-cf0e-4f5b-be06-e67195b6e3dd,
  abstract     = {This paper examines the professional and scientific views on the social, ethical and legal issues that impact on the provision of genetic services in Europe. Many aspects have been considered, such as the definition and the aims of genetic services, their organization, the quality assessment, public education, as well as the partnership with patients support groups and the multicultural aspects. The methods was primarily the analysis of professional guidelines, legal frameworks and other documents related to the organization of genetic services, mainly from Europe, but also from USA and international organizations. Then, the method was to examine the background data emerging from an updated report produced by the Concerted Action on Genetic Services in Europe, as well as the issues debated by 43 experts from 17 European countries invited to an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Helsinki, Finland, 8 and 9 September 2000. Some conclusions were identified from the ESHG workshop to arrive at outlines for optimal genetic services. Participants were concerned about equal accessibility and effectiveness of clinical genetic services, quality assessment of services, professional education, multidisciplinarity and division of tasks as well as networking. Within European countries, adherance to the organizational principles of prioritization, regionalization and integration into related health services would maximize equal accessibility and effectiveness of genetic actions. There is a need for harmonization of the rules involved in financial coverage of DNA tests in order to make these available to all Europeans. Clear guidelines for the best practice will ensure that the provision of genetic services develops in a way that is beneficial to its customers, be they health professionals or the public, especially since the coordination of clinical, laboratory and research perspectives within a single organizational structure permits a degree of coherence not often found in other specialties.},
  author       = {Godard, B and Kaariainen, H and Kristoffersson, Ulf and Tranebjaerg, L and Coviello, D and Ayme, S},
  issn         = {1476-5438},
  keyword      = {quality control,genetic testing,genetic services,counselling,genetic counselling,Europe},
  language     = {eng},
  pages        = {13--48},
  publisher    = {Nature Publishing Group},
  series       = {European Journal of Human Genetics},
  title        = {Provision of genetic services in Europe: current practices and issues},
  url          = {http://dx.doi.org/},
  volume       = {11},
  year         = {2003},
}