Codes of Ethics for Genetics Professionals

Abstract

The field of genetic research, technology, and application is rapidly advancing. While such advancement provides great promise to evaluate, diagnose and treat medical conditions, there are many ethical and regulatory questions and challenges that must be addressed. In this article, we attempt to highlight both government regulation and professional codes of ethics as they relate to biomedical genetic technology. This article starts by articulating the first genetic code of ethics published in Canada in 1986, as well as other North American organisations, followed by European Union organisations, efforts around the globe and, finally, published guidelines or ethical codes that serve genetic professionals on an international scale. We also highlight that as genetic technology constantly changes, professionals and their ethical guidelines must adapt as well.

Key Concepts

  • Molecular biologists, biochemists, informatics professionals, genomicists and clinical researchers as well as clinicians and genetic counsellors are using genetic technology.
  • Government regulation alone is not enough to ensure that this technology is being used appropriately.
  • Many independent and professional organisations are also contributing to this arena.
  • This review for genetic professionals attempts to provide an overview of both comprehensive formal codes and decisions by various bodies that guide ethical medical genetics practices and supplement federal regulations.
  • The spread of genetic technologies around the world is adding to the challenge of adequately addressing the ethical issues raised in various nations and cultures.

Keywords: genetic technology; genetic professional; genetic counsellor; code of ethics; direct‐to‐consumer; incidental findings

References

23andMe (2014) Welcome. https://www.23andme.com/.

ACMG (2014) American College of Medical Genetics and Genomics Policy Statements. https://www.acmg.net/ACMG/Publications/Policy_Statements/ACMG/Publications/Policy_Statements.aspx?hkey=6b7572b3‐d01c‐42a5‐b59e‐c0593347751c

American Medical Association (2014a) Code of Medical Ethics. http://www.ama‐assn.org/ama/pub/physician‐resources/medical‐ethics/code‐medical‐ethics.page?

American Medical Association (2014b) Council on Ethical and Judicial Affairs. http://www.ama‐assn.org/ama/pub/about‐ama/our‐people/ama‐councils/council‐ethical‐judicial‐affairs.page.

American Nurses Association (1998) ANA Statement of the Scope and Standards of Genetic Clinical Nursing Practice. Washington, DC: ANA.

American Nurses Association (2001a) ANA Code of Ethics for Nurses. Washington, DC: ANA.

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.

American Society of Human Genetics (2014) Policy and Position Statement Archive. http://www.ashg.org/pages/policy_statements.shtml

Annas GJ and Elias S (2014) 23andMe and the FDA. New England Journal of Medicine 370 (11): 985–988.

Australian Government National Health and Medical Research Council (NHMRC) (2013) Discussing Direct‐to‐Consumer Genetic DNA Testing with Patients: A short Guide for Health Professionals. https://www.nhmrc.gov.au/guidelines/publications/g7.

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.

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.

Canadian College of Medical Geneticists (1986) Professional and Ethical Guidelines. Ottawa, ON: Canadian College of Medical Geneticists.

Capps B, Chadwick R, Chalmers DRC, et al. (2013) Imagined Futures: Capturing the Benefits of Genome Sequencing for Society. Human Genome Organisation.

Codigo de Etica Medica (2010) Sixth Brazilian Code of Medical Ethics is already in Force. http://www.portalmedico.org.br/novocodigo/index.asp.

Council of Europe. Committee of Ministers (2010) Council of Europe. http://www.coe.int/t/dg3/healthbioethic/texts_and_documents/default_en.asp.

Council of Europe (2014) European Conference of National Ethics Committees (COMETH). http://www.coe.int/t/dg3/healthbioethic/COMETH/national_ethics_committees/default_en.asp.

Dugas R (2005) Nursing and genetics: applying the American Nurses Association's code of ethics. Journal of Professional Nursing 21 (2): 103–113.

European Commission (2014) Activites 2011–2016. http://ec.europa.eu/bepa/european‐group‐ethics/welcome/activities/index_en.htm.

European Commission (2014) Welcome. http://ec.europa.eu/bepa/european‐group‐ethics/welcome/index_en.htm.

European Parliament (2001). European Parliament's Report on Ethical, Legal, Economic, and Social Implications of Human Genetics. http://www.europarl.europa.eu/comparl/tempcom/genetics/final_report_en.htm.

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. http://www.eshg.org.

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. http://www.eshg.org.

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. http://www.eshg.org.

European Society of Human Genetics (2012) ESHG or ESHG endorsed Documents. https://www.eshg.org/eshgdocs.0.html.

European Commission (2014) Forum of National Ethics Councils. http://ec.europa.eu/bepa/european‐group‐ethics/welcome/index_en.htm.

Gov.UK (closed) (2014) Emerging Science and Bioethics Advisory Committee. https://www.gov.uk/government/groups/emerging-science‐and‐bioethics‐advisory‐committee.

H3Africa Human Hereditary and Health in Africa (2014) Ethics and Governance. http://h3africa.org/about/ethics‐and‐governance.

Hazin R et al. (2013) Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genetics in Medicine 15 (10): 810–816.

HUGO Ethics Committee (1996) Statement on the principled conduct of genetics research. Eubios Journal of Asian and International Bioethics 6: 59–60.

Hugo‐international.org (2014). HUGO. http://hugo‐international.org/comm_hugoethicscommittee.php.

Human D and Fluss S (2001) The World Medical Association's Declaration of Helsinki: Historical and Contemporary Perspectives. http://www.wma.net/e/ethicsunit/pdf/draft_historical_contemporary_perspectives.pdf.

Human Genetics Commission (2002) Inside Information: Balancing Interests in the Use of Personal Genetic Data. http://webarchive.nationalarchives.gov.uk/20061023110946/http://hgc.gov.uk/UploadDocs/DocPub/Document/insideinformation_summary.pdf.

Human Genetics Commission (2007) http://webarchive.nationalarchives.gov.uk/20061023110946/http://hgc.gov.uk/client/content_wide.asp?contentid=6.

Human Genome Organisation (HUGO) (2014) HUGO Committee on Ethics, Law, and Society. http://www.hugo‐international.org/comm_hugoethicscommittee.php.

Institute of Medicine (2012) Integrating Large‐Scale Genomic Information into Clinical Practice: Workshop Summary. Washington, DC: The National Academies Press.

Japan Society of Human Genetics (2014) From the Background to the Foundation of JSHG. http://jshg.jp/e/introduction/index.html.

Knoppers BM and Chadwick R (2005) Human genetic research: emerging trends in ethics. Nature Genetics 6: 75–79.

Knoppers BM, Hirtle M, and Lormeau S, (1995) Statement on the Principled Conduct of Genetics Research. http://www.hugo‐international.org/img/statment%20on%20the%20principled%20conduct%20of%20genetics%20research.pdf.

Legisalud Argentina (2007) Legislacion Bioetic. http://leg.msal.gov.ar/bioetica.htm#24.

Medical College of Chile (2014) Declaration of the World Medical Association on Genetic Counseling and Genetic Engineering. http://www.colegiomedico.cl/Default.aspx?tabid=227.

National Consultative Ethics Committee for Health and Life Sciences (France) (2014) CCNE Publications. http://www.ccne‐ethique.fr/en/publications.

National Health and Medical Research Council (2014) Guidelines and Publications. http://www.nhmrc.gov.au/guidelines/search.

National Human Genome Research Institute (2014a) Genetic Information Nondiscrimination Act of 2008. http://www.genome.gov/24519851.

National Human Genome Research Institute (2014b) Regulation of Genetic Tests. http://www.genome.gov/10002335#al‐3.

National Society of Genetic Counselors (2006) National Society of Genetic Counselors Code of Ethics Code of Ethics. http://nsgc.org/p/cm/ld/fid=12.

Nuffield Council on Bioethics (2014) How the Council Works. http://www.nuffieldbioethics.org/content/how‐council‐works#ukpolicy.

Olson S, Beachy SH, Giammaria CF, et al. (2012) Section 6: Ethical and Legal Issues, Integrating Large Scale Genomic Information into Clinical Practice, 47–52, Washington, DC: The National Academy Press.

Parker M and Lucassen A (2002) Working towards ethical management of genetic testing. Lancet 360: 1685–1688.

Rojas‐Martinez A, Giraldo‐Ríos A, Jiménez‐Arce G, et al. (2014) RELAGH‐ the challenge of having a scientific network in Latin America: an account from the presidents. Genetics and Molecular Biology 37: 305–309.

Rothstein MA (1998) Genetic privacy and confidentiality: why they are so hard to protect. Journal of Law, Medicine, & Ethics 26: 198–204.

The Royal Society of New Zealand (2012) Code of Professional Standards and Ethics. http://www.royalsociety.org.nz/organisation/about/code/#12‐1‐appropriate‐use‐of‐genetic‐information.

Supreme Court of the United States (2012) Association for Molecular Pathology et al. v. Myriad Genetics, Inc. http://www.supremecourt.gov/opinions/12pdf/12‐398_1b7d.pdf.

Whittaker P and Alivizatos NC (2003) Ethical Aspects of Genetic Testing in the Work Place. The European Group on Ethics in Science and New Technology.

World Medical Association (2013) WMA Declaration of Helsinki ‐ Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/30publications/10policies/b3/.

World Health Organization (1998) Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services, Geneva: In Press.

Further Reading

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.

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.

McGuire AL et al. (2013) American Association for the Advancement of Science: "Ethics and genomic incidental findings.". Science (New York, NY) 340.6136: 1047.

National Academy of Sciences and National Research Council (1975) Genetic Screening: Programs, Principles and Research. Washington, DC: National Academy of Sciences; 388p.

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.

Nuffield Council on Bioethics (2006) Genetic Screening: A Supplement to the 1993 Report. London, UK: Nuffield Council on Bioethics.

Wertz DC and Fletcher JC (eds) (1989) Ethics and Human Genetics: A Cross‐cultural Perspective. Berlin/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.

Contact Editor close
Submit a note to the editor about this article by filling in the form below.

* Required Field

How to Cite close
Shuster, Julia, and FitzGerald, Kevin(Jan 2015) Codes of Ethics for Genetics Professionals. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005589.pub3]