Articles and reports released by unit 4

Workpackage 6.3: Ethical issues

A literature review has been done on the topic of genetic testing in minors.

• A Technology Assessment Contribution to the Eurogentest Network of Excellence, 2005, Brussel. VIWTA, Ethical and Social Aspects of Genetic Testing Services: Issues and Possible Actions.
• P. Borry, JP Fryns, P. Schotsmans & K. Dierickx, "Attitudes Towards Carrier Testing in Minors: a Systematic Review", Genetic Counseling, Vol. 16, No. 4, 2005, 341-352.
• P. Borry, JP Fryns, P. Schotsmans & K. Dierickx, Abstract Carrier Testing in Minors: A Systematic Review of Guidelines and Position Papers, European Journal of Human Genetics 14 (2006)133-138.
• P. Borry, JP Fryns, P. Schotsmans & K. Dierickx, Carrier Testing in Minors: A Systematic Review of Guidelines and Position Papers European Journal of Human Genetics 14 (2006)133-138.
• Pascal Borry, Louise Stultiens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx, Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers, Clinical Genetics 70 (2006) 5, 374-81.
• P. Borry, J.P. Fryns, K. Dierickx, in A. de Bouvet, P. Boitte, G. Aiguier, Predictive Genetic Testing in Children. A clinical-ethical analysis, Questions éthiques en medicine prédictive, Montrouge, John Libbey and Company, 2006.
• Pascal Borry, Louise Stultiëns, Herman Nys, Kris Dierickx, Attitudes towards predictive genetic testing in minors for familial breast cancer: a systematic review. Critical Reviews in oncology and hematology, doi:10.1016/j.critrevonc.2007.04.006
• P. Borry, K. Dierickx. Carrier testing for congenital adenal hyperplasia: ethical issues. Cares 6 (1) Winter 2007, p. 16-18.
• Pascal Borry, Herman Nys, Kris Dierickx, Carrier testing in minors: conflicting minors. Nature Review Genetics 8 (2007) 828

A survey of clinical geneticists has been done on the topic of genetic testing in minors.

• Pascal Borry, Tom Goffin, Herman Nys, Kris Dierickx, Attitudes regarding carrier testing in incompetent children. A survey of European clinical geneticists, European Journal of Human Genetics (in press).
• Pascal Borry, Louise Stultiëns, Tom Goffin, Herman Nys, Kris Dierickx, Minors and informed consent in carrier testing. A survey of European clinical geneticists, Journal of Medical Ethics (in press)

Other

• Pascal Borry, Angus Clarke, Kris Dierickx, Carrier screening for Gaucher, European Journal of Human Genetics (advanced e-publication).
• P. Borry, H. Nys, T. Goffin & K. Dierickx, Genetic testing and counseling, European guidance, Ethical-Legal Papers n°4, Leuven, 2007, 91p (ISBN: 978-90-334-6579-6).

Workpackage 6.4: Patient Rights

• L. Stultiëns, T. Goffin, P. Borry, K. Dierickx, H. Nys, “Minors and informed consent: a comparative approach”, European Journal of Health Law 14 (2007) 1-30.
• H.Nys, L.Stultiëns, P.Borry, T.Goffin and K.Dierickx, "Patient Rights in EU Member States after the ratification of the Convention on Human Rights and Biomedicine", Health Policy (Health Policy) 83 (2007); 223-235.
• T. Goffin, P. Borry, K. Dierickx and H. Nys, “Why eight EU Member States signed, but not yet ratified the Convention for Human Rights and Biomedicine”. (Health Policy).
• H.Nys, T.Goffin, L.Stultiëns, P.Borry and K.Dierickx, " Patient Rights in the EU : Denmark", European Ethical-Legal papers n°2, Leuven, 2007, 50 p.
• P. Borry, H. Nys, K. Dierickx and T. Goffin, “Genetic testing and Counselling – European Guidance”, European Ethical-Legal Papers , n° 3, Leuven, 2007, 109p.
• H. Nys, et al., “Patient Rights in the EU- Estonia”, European Ethical-Legal Papers, N°5, Leuven, 2007.
• T. Goffin, et al., “Patient Rights in the EU – Greece”, European Ethical-Legal Papers, N°6, Leuven, 2007.
• T.Goffin, D.Zinovieva, et al. “Patient Rights in the EU – Bulgaria”, European Ethical-Legal Papers, N°8, Leuven, 2007.
• T.Goffin, et al., “Patient Rights in the EU – Cyprus”, European Ethical-Legal Papers, N°9, Leuven, 2007.
• S.Defloor, et al., “Patient Rights in the EU – Hungary”, European Ethical-Legal Papers, N°11, Leuven, 2007.
• H.Nys, et al., “Patient Rights in the EU – Lithuania”, European Ethical-Legal Papers, N° 12, Leuven, 2007
• H.Nys, T.Goffin, L.Stultiëns, P.Borry and K.Dierickx, " Patient Rights in the EU : Czech Republic" in "European Ehical-Legal papers" n°1, Leuven, 2006, 46 p
• H.Nys, Towards an International Treaty on Human Rights and Biomedicine? Some reflections inspired by UNESCO's Universal Declaration on Bioethics and Human Rights (Editorial), European Journal of Health Law, 2006, (1), 5-9.
• Pascal Borry, Louise Stultiens, Herman Nys, Jean-Jacques Cassiman, Kris Dierickx, Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers, Clinical Genetics 70 (2006) 5, 374-81.