Key Points
Bullet points, reflecting the most important issues of my chapter
• Quality in genetic services presupposes clear, consistent and well-argued for ethical premises.
• Without such premises, priorities, public confidence and quality of genetic services are likely to be negatively affected.
• Choice of alternative formulations or provisions in quality assurance guidelines are based on, and intended to protect, ethical values.
• Sometimes there are tensions in our culture between these values, which give rise to ethical conflicts or problems.
• Ethical condiderations enter into several different levels of discourse, five of which are discussed in the present chapter.
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References
Beauchamp T, Childress J. Principles of Biomedical Ethics. 5th edn. New York: Oxford University Press, 2000.
Bentham J. A Fragment on Government and an Introduction to the Principles of Morals and Legislation. Edited with an introduction by Wilfrid Harrison. Oxford: Basil Blackwell, 1960.
Buchanan A, Brock DW, Daniels N, Wikler D. From Chance to Choice. Genetics and Justice. Cambridge: Cambridge University Press, 2000.
Chadwick R, Lewitt M, Shickle D (eds.). The Right to Know and the Right Not to Know. Avebury: Aldershot, 1997.
Chadwick. R. Dimensions of qualiy in genetic services – an ethical comment. Eur J Hum Genet 1997; 5(Suppl 2): 22–24.
Council of Europe. Convention on Human Rights and Biomedicine (The Oviedo Convention). European Treaty Series No. 164. Strasbourg, 1996. Accessible via http://www.coe.org
Council of Europe. Additional Protocol to the Convention on Human Rights and Biomedicine, Concerning Genetic Testing for Health Purposes. Strasbourg, 2009 (CETS No. 203). Accessible via http://www.coe.org
European Commission. Directive 95/46/EC on the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of Such Data. Brussels, 1995.
EGE. Statement by the European Group on Ethics in Science and New Technologies on Advertising Genetic Tests via the Internet. Europa, Press Releases. Reference: IP/03/273. Brussels, 2003.
European Society of Human Genetics. Provision of genetic services in Europe: current practices and issues. Recommendations of the European society of human genetics. Eur J Hum Genet 2003; 11(Suppl 2): 82–84.
Fleischhauer K, Hermerén G. Goals of Medicine in the Course of History and Today. Stockholm: Kungl. Vitterhets Historie och Antikvitets Akademien (Almqvist & Wiksell International distr), 2006.
Godard B, Kääriäinen H, Kristoffersson U, Tranebjaerg L, Coviello D, Aymé S. Provision of genetic services in Europe: current practices and issues. Eur J Hum Genet 2003; 11: 13–48.
Hermerén G. Challenges in the evaluation of nanoscale research: ethical aspects. NanoEthics 2007; 1: 223–237.
Ibarreta D, Elles R, Cassiman J-J, Rodriguez-Cerezo E, Dequeker E. Towards quality assurance and harmonization of genetic testing services in the European Union. Nat Biotechnol 2004; 22: 1230–1235.
Knoppers BM, Joly Y, Simard J, Durocher F. The emergence of an ethical duty to disclose genetic research results: international perspectives. Eur J Hum Genet 2006; 14: 1170–1178.
OECD. Guidelines for Quality Assurance in Genetic Testing. Paris: OECD, 2007. Accessible via http://www.oecd.org
World Health Organization (WHO). Proposed International Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services. Geneva: WHO, 1997.
Singer P. Practical Ethics. Cambridge: Cambridge University Press, 1993.
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Hermerén, G. (2010). Quality Issues in Clinical Genetic Services: Ethical Aspects. In: Kristoffersson, U., Schmidtke, J., Cassiman, J. (eds) Quality Issues in Clinical Genetic Services. Springer, Dordrecht. https://doi.org/10.1007/978-90-481-3919-4_23
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DOI: https://doi.org/10.1007/978-90-481-3919-4_23
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