Rachel Wurzman, Georgetown University, Washington, DC, USA
Kevin FitzGerald, Georgetown University, Washington, DC, USA
Published online: July 2008
DOI: 10.1002/9780470015902.a0005589.pub2
Codes of ethics in genetics exist but need further development to keep pace with the rapid evolution of Genetic Technology. Government involvement in regulating genetics must be accompanied by professional codes of ethics to adequately protect users of this knowledge.
Keywords: ethics; code of ethics; genetics professional; genetics counsellor; principles of ethics
| References | |
| ACMG/ASHG Joint Test and Technology Transfer Committee (2000) An ACMG/ASHG position statement. I. Technical considerations: technical and clinical assessment of fluorescence in situ hybridization. Genetics in Medicine 2(6): 356–361. | |
| ACMG/ASHG Joint Test and Technology Transfer Committee Working Group (2000) Joint statement of the American College of Medical Genetics and American Society of Human Genetics: genetic testing for colon cancer. Genetics in Medicine 2(6): 362–366. | |
| ACMG Dysmorphology Subcommittee of the Clinical Practice Committee (2000) Informed consent for medical photographs. Genetics in Medicine 2(6): 353–355. | |
| ACMG Social, Ethical and Legal Issues Committee (2000) Guidelines for expert witness testimony for the specialty of medical genetics. Genetics in Medicine 2(6): 367–368. | |
| book American Medical Association (2001) Code of Medical Ethics. Washington, DC: AMA. | |
| book American Nurses Association (1998) ANA Statement of the Scope and Standards of Genetic Clinical Nursing Practice. Washington, DC: ANA. | |
| book American Nurses Association (2001a) ANA Code of Ethics for Nurses. Washington, DC: ANA. | |
| book American Nurses Association (2001b) ANA Code of Ethics for Nurses with Interpretive Statements. Washington, DC: ANA. | |
| American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure (1998) ASHG statement: professional disclosure of familial genetic information. American Journal of Human Genetics 62: 474–483. | |
| book Andrews LB, Fullarton JE, Holtzman NA and Motulsky AG (eds) (1994) Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: National Academy Press. | |
| ePath Australian Government National Health and Medical Research Council (NHMRC) (2000) Ethical Aspects of Human Genetic Testing – an information paper. Retrieved on 3 July 2007 from http://www.nhmrc.gov.au/publications/subjects/genetics.htm. | |
| ePath Australian Government National Health and Medical Research Council (NHMRC) (2003) Essentially Yours – The Protection of Human Genetic Information in Australia – Volumes 1 and 2. Retrieved on 3 July 2007 from http://www.nhmrc.gov.au/publications/subjects/genetics.htm. | |
| ePath Australian Government National Health and Medical Research Council (NHMRC) (2007) Ethical Guidelines on the use of assisted reproductive technology in clinical practice and research. Retrieved on 3 July 2007 from http://www.nhmrc.gov.au/publications/subjects/genetics.htm. | |
| Baumiller RC, Comley S, Cunningham G et al. (1996a) Code of ethical principles for genetics professionals. American Journal of Medical Genetics 65: 177–178. | |
| Baumiller RC, Cunningham G, Fisher N et al. (1996b) Code of ethical principles for genetics professionals: an explication. American Journal of Medical Genetics 65: 179–183. | |
| book Beauchamp TL and Childress JE (2001) Principles of Biomedical Ethics, 5th edn. Oxford: Oxford University Press. 1–454. | |
| Boer GJ (1994) Ethical guidelines for the use of human embryonic or fetal tissue for experimental and clinical neurotransplantation and research (NECTAR). Journal of Neurology 242(1): 1–13. | |
| book Canadian College of Medical Geneticists (1986) Professional and Ethical Guidelines. Ottawa: Canadian College of Medical Geneticists. | |
| Council of Europe. Committee of Ministers (2003) Council of Europe (recommendation of the Committee of Ministers to member states on xenotransplantation). European Journal of Health Law 10(3): 305–315. | |
| Dugas R (2005) Nursing and genetics: applying the American Nurses Association's code of ethics. Journal of Professional Nursing 21(2): 103–113. | |
| book Englehardt HT (1996) The Foundations of Bioethics, 2nd edn. Oxford: Oxford University Press. | |
| ePath European Parliament's Report on Ethical, Legal, Economic, and Social Implications of Human Genetics (2001) Retrieved on 8 July 2007 from http://www.europarl.europa.eu/comparl/tempcom/genetics/final_report_en.htm. | |
| ePath European Society of Human Genetics (2001a) A letter to members of the European Parliament. ESHG Response to the European Parliament's Report on Ethical, Legal, Economic, and Social Implications of Human Genetics. Retrieved on 8 July 2007 from http://www.eshg.org. | |
| ePath European Society of Human Genetics (2001b) Changes to the Fiori Report recommended by the ESHG. ESHG Response to the European Parliament's Report on Ethical, Legal, Economic, and Social Implications of Human Genetics. Retrieved on 8 July 2007 from http://www.eshg.org. | |
| ePath European Society of Human Genetics (2001c) Overview comments about the report and its history so far. ESHG Response to the European Parliament's Report on Ethical, Legal, Economic, and Social Implications of Human Genetics. Retrieved on 8 July 2007 from http://www.eshg.org. | |
| ePath Forum of National Ethics Councils (website) (2007) Retrieved on 3 July from http://ec.europa.ed/research/science-society/index.cfm. | |
| book Gert B, Berger EM and Cahill GF et al. (1996) Morality and the new genetics. Sudbury, MA: Jones and Bartlett. 1–242. | |
| HUGO Ethics Committee (1996) Statement on the principled conduct of genetics research. Eubios Journal of Asian and International Bioethics 6: 59–60. | |
| ePath Human D and Fluss S (2001) The World Medical Association's Declaration of Helsinki: Historical and Contemporary Perspectives. Retrieved on 8 July 2007 from http://www.wma.net/e/ethicsunit/pdf/draft_historical_contemporary_perspectives.pdf. | |
| ePath Human Genetics Commission (2002) Inside Information: Balancing interests in the use of personal genetic data. Retrieved on 26 September from http://www.hgc.gov.uk/UploadDocs/DocPub/Document/insideinformation.pdf. | |
| ePath Human Genetics Commission website (2007) Retrieved on 26 September from http://www.hgc.gov.uk. | |
| ePath Human Genome Organisation (HUGO) Ethics Committee Website (2007) Retrieved on 24 September from http://www.hugo-international.org/committee_ethics_info.htm. | |
| Jeffords JM and Daschle T (2001) Political issues in the Genome Era. Science 291: 1249–1251. | |
| Knoppers BM and Chadwick R (2005) Human genetic research: emerging trends in ethics. Nature Genetics 6: 75–79. | |
| Parker M and Lucassen A (2002) Working towards ethical management of genetic testing. Lancet 360: 1685–1688. | |
| ePath National Consultative Ethics Committee for Health and Life Sciences (France) Website (2007) Retrieved on 1 October from http://www.ccne-ethique.fr/?language=2. | |
| National Society of Genetic Counselors (1992) National Society of Genetic Counselors Code of Ethics. Journal of Genetic Counseling 1: 41–43. | |
| ePath National Society of Genetic Counselors (2006) National Society of Genetic Counselors Code of Ethics Code of Ethics. Retrieved on 3 July 2007 from http://www.nsgc.org/about/codeEthics.cfm. | |
| ePath Nuffield Bioethics Council website (2007) Retrieved on 24 September from http://www.nuffieldbioethics.org/go/aboutus/. | |
| van Ommen G-JB (2002) The Human Genome Project and the future of diagnostics, treatment and prevention. Journal of Inherited Metabolic Disorders 25: 183–188. | |
| Rothstein MA (1998) Genetic privacy and confidentiality: why they are so hard to protect. Journal of Law, Medicine, & Ethics 26: 198–204. | |
| ePath The Royal Society of New Zealand (2003) Code of Professional Standards and Ethics. Retrieved on 25 June 2007 from http://www.rsnz.org/directory/code_ethics.php. | |
| ePath World Health Organization, Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services (2007) Unofficial 1998 WHO Document. Retrieved on 3 July 2007 from http://www.who.int/publications/en/. | |
| Further Reading | |
| other American Association for the Advancement of Science (1992) The Genome, Ethics and the Law: Issues in Genetic Testing. A Report of a Conference on the Ethical and Legal Implications of Genetic Testing sponsored by the AAAS-ABA National Conference of Lawyers and Scientists and the AAAS Committee on Scientific Freedom and Responsibility, Coolfont Conference Center, Berkeley Springs, West Virginia, 14–16 June 1991. Washington, DC: American Association for the Advancement of Science, 124p. | |
| American Medical Association. Council on Ethical and Judicial Affairs (1994) Ethical issues related to prenatal genetic testing. Archives of Family Medicine 3(7): 633–642. | |
| book Conrad P and Gabe J (eds) (2000) Sociological Perspectives on the New Genetics. Oxford, UK: Blackwell Publishers. | |
| Elsas LJ (1990) A clinical approach to legal and ethical problems in human genetics. Emory Law Journal 39(3): 811–853. | |
| book National Academy of Sciences and National Research Council (1975) Genetic Screening: Programs, Principles and Research. Washington, DC: National Academy of Sciences. 388p. | |
| book National Institutes of Health (United States) [NIH]. Secretary's Advisory Committee on Genetic Testing (SACGT) (2000) Enhancing the Oversight of Genetic Tests: Recommendations of the SACGT. Washington, DC: National Institutes of Health. 42p. | |
| book Nuffield Council on Bioethics (1993) Genetic Screening: Ethical Issues. London, UK: Nuffield Council on Bioethics. 115p. | |
| book Wertz DC and Fletcher JC (eds) (1989) Ethics and Human Genetics: A Cross-cultural Perspective. Berlin and New York: Springer-Verlag. | |
| Wertz DC and Fletcher JC (1993) Proposed: an international code of ethics for medical genetics. Clinical Genetics 44(1): 37–43. | |
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