Regulations and practices of genetic counselling in 38 European countries: The perspective of national representatives

European Journal of Human Genetics

Volumn 16, Issue 10, 2008, Pages 1208-1216

  Rantanen, Elina ^a   Hietala, Marja ^a   Kristoffersson, Ulf ^b   Nippert, Irmgard ^c   Schmidtke, Jörg ^d   Sequeiros, Jorge ^e,f   Kääriäinen, Helena ^a,g  

^a UNIVERSITY OF TURKU   (Finland)

^b LUND UNIVERSITY HOSPITAL   (Sweden)

^c INST OF REPRO MED OF THE UNIV   (Germany)

^d HANNOVER MEDICAL SCHOOL   (Germany)

^e UNIVERSITY OF PORTO   (Portugal)

^f UNIVERSITY OF PORTO   (Portugal)

^g NATIONAL PUBLIC HEALTH INSTITUTE   (Finland)

Author keywords

[No Author keywords available]

Indexed keywords

CONFIDENTIALITY; DISEASE PREDISPOSITION; ETHNIC GROUP; EUROPE; GENETIC COUNSELING; GENETIC SERVICE; GOVERNMENT REGULATION; HEALTH CARE PERSONNEL; INFORMED CONSENT; LAW; MEDICAL GENETICS; MEDICAL PRACTICE; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; RELATIVE; REVIEW;

DATA COLLECTION; EUROPE; GENETIC COUNSELING; HUMANS; PRACTICE GUIDELINES AS TOPIC;

EID: 53249134468     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2008.93     Document Type: Review

References (22)

1. Godard B, Kääriäinen H, Kristoffersson U, Tranebjaerg L, Coviello D, Aymé S: Provision ofCgenetic services in Europe: current practices and issues. Eur J Hum Genet 2003; 11 (Suppl 2): 13-48.
2. Resta R, Bowles Biesecker B, Bennett RL et al: A new definition of genetic counseling: National Society of Genetic Counselors' Task Force Report. J Genet Couns 2006; 15: 77-83.
3. Rantanen E, Hietala M, Kristoffersson U et al: What is ideal genetic counselling? A survey of current international guidelines. Eur J Hum Genet 2008; 16: 445-452.
4. Wertz DC, Fletcher JC: Genetics and Ethics in Global Perspective. Dordrecht: Kluwer Academic Publishers, 2004.
5. Wertz DC, Fletcher JC: AttiAudes of genetic counselors: a multinational survey. Am J Hum Genet 1988; 42: 592-600.
6. Bowles Biesecker B, Marteau TA: The future of genetic counselling: an international perspective. Nat Genet 1999; 22: 133- 137.
7. OECD: Guidelines for Quality Assurance in Molecular Genetic Testing OECD: Paris, 2007.
8. Ibarreta D, Bock A, Klein C, Rodriguez-Cerezo E: Towards Quality Assurance and Harmonisation of Genetic Testing Services in the EU. European Commission Joint Research Centre: Seville, 2003.
9. Harris R: Genetic services in Europe. A Comparative Study of 31 Countries by the Concerted Action on Genetic Services in Europe. Eur J Hum Genet 1997; 5 (Suppl 2): 1-220.
10. Matthiessen-Guyader L: Survey on National Legislation and Activities in the Field of Genetic Testing in EU Member States. European Commission Directorate General: Research: Brussels, 2005.
11. Soini S: National regulation of genetic counselling. Published on EuroGentest website 2006.
12. Borry P, Nys H, Goffing T, Dierickx K: Genetic testing and counselling. European Guidance. European Ethical-Legal Papers No 3. Leuven, 2007.
13. Orphanet .
14. World Medical Association: Declaration on the Rights of the Patient Lisbon, Portugal: World Medical Assembly, 1981.
15. Clarke AJ: The process of genetic counselling. Beyond nondirectiveness; in Harper, PS, Clarke, AJ (eds).: Genetics, Society and Clinical Practice. Oxford: BIOS Scientific Publishers, 1997, pp 179-200.
16. Weil J: Psychosocial genetic counseling in the post-nondArective era: a point of view. J Genet Couns 2003; 12: 199-211.
17. Green MJ, Botkin JR: Genetic eCceptionalism in medicine: clarifying the differences between genetic and nongenetic tests. Ann Intern Med 2003; 138: 571-575.
18. Vineis P, Schulte P, McMichael AJ: Misconceptions about the use of genetic tests in populations. Lancet 2001; 357: 709-712.
19. Evans JP, Skrzynia C, Burke W: The complexities of predictive genetic testing. BMJ 2001; 322: 1052-1056.
20. Yang Q, Khoury MJ, Botto L, Friedman JM, Flanders WD: Improving the prediction of complex diseases by testing for multiple disease-susceptibility genes. Am J Hum Genet 2003; 72: 636-649.
21. Letendre M, Godard B: Expanding thA physician's duty of care: a duty to recontact? Med Law 2004; 23: 531-539.
22. Hunter AGW, Sharpe N, Mullen M, Meschino WS: Ethical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical genetics. Am J Med Genet 2001; 103: 265-276.