Ethics, guidelines and standards
From ISOGG Wiki
This page provides a selection of resources on the subject of ethics, guidelines and standards which are particularly applicable to genetic genealogists.
- 1 Codes of conduct, guidelines and standards for genetic genealogists
- 2 Codes of conduct, guidelines and standards for genealogists
- 3 Guidelines for direct-to-consumer genetic testing
- 4 Guidelines for medical and academic research
- 5 Statements on "race"
- 6 Academic papers
- 7 Other articles
- 8 Blogs
- 9 Relevant blog posts
- 10 Further reading
- 11 Organisations
- 12 General links
- 13 See also
Codes of conduct, guidelines and standards for genetic genealogists
- Genetic genealogy standards
- For background on the creation of the standards see the blog post by Blaine Bettinger Announcing the genetic genealogy standards. The Genetic Genealogist, 10 January 2015.
- ISOGG Project Administrator Guidelines
- GDPR - ISOGG Interim Guidance for DNA Project Administrators
- Family Tree DNA Group Administrator Guidelines
- DNA Privacy A video in DearMyrtle's series "Demystifying my DNA tests" where she discusses the privacy issues relating to DNA testing with Angie Bush, Blaine Bettinger and Judy Russell
Codes of conduct, guidelines and standards for genealogists
- National Genealogical Society's Standards and Guidelines for Genealogists (US)
- The Society of Genealogists' Principles of Genealogical Research (UK)
- Council for the Advancement of Forensic Genealogy: Standards of Practice and Conduct (US)
- Board for Certification of Genealogists' Genealogical Proof Standard (US)
- Board for Certification of Genealogists' Code of Ethics and Conduct (US)
- Association of Professional Genealogists' Code of Ethics
- IAJGS Ethics for Jewish Genealogists Guidelines from the International Association for Jewish Genealogists
- The Australian Organisation of Family History Association's Code of Ethics
- Suomen Sukututkimusseura / the Finnish Genealogical Society: The code of conduct of genealogical research in Finland, Käytännesäännöt (in Finnish)
Guidelines for direct-to-consumer genetic testing
- A Common Framework of Principles for direct-to-consumer genetic testing services. Guidelines compiled after extensive consultation by the now defunct Human Genetics Commission in the UK.
Guidelines for medical and academic research
- Ethics of DNA research on human remains: five globally applicable guidelines. Nature, published online 20 October 2021. See also the commentary by Sabrina Imbler in the New York Times https://www.nytimes.com/2021/10/20/science/ancient-dna-archaeology-ethics.html Ancient-DNA Researchers Set Ethics Guidelines for Their Work] (20 October 2021).
- Wagner J et al (2018). Fostering responsible research on ancient DNA. American Journal of Human Genetics 107 (2): 183-195.
- San people of Africa draft code of ethics for researchers by Linda Nordling. Science 17 March 2017.
- Botkin JR, Belmont JW, Berg JS et al (2015). ASHG Position Statement. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 97(1): 6–21 (subscription required). Press release here.
- Personalised healthcare: Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age. A report from the Nuffield Council of Bioethics (UK)
- The four principles of biomedical ethics by Adrian Alcroft, BioMedCentral, 13 July 2012
- Code of Practice for Research compiled by the UK Research Integrity Office
- Good research practice: principles and guidelines compiled by the Medical Research Council (UK)
- The Concordat to Support Research Integrity An initiative from Universities UK, the Wellcome Trust and research councils to provide a framework for good research conduct in the UK
- Guidelines for Human Biobanks and Genetic Research Databases from the Organisation for Economic Co-operation and Development (OECD)
- Privacy and Progress in Whole Genome Sequencing A report from the Presidential Commission for the Study of Bioethical Issues, October 2012 (US)
- Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes Council of Europe, Strasbourg 2008.
- UNESCO International Declaration on Human Genetic Data 2003.
Statements on "race"
- A statement on race and racism from the American Association of Physical Anthropologists approved on 27 March 2019.
- Biological aspects of race American Association of Physical Anthropologists Statement on Biological Aspects of Race. Published in the American Journal of Physical Anthropology 1996; 101: 569-570.
- American Anthropological Association Statement on Race 17 May 1998.
- Mathews DJH and Jamal L. Revisiting respect for persons in genomic research. Genes 2014; 5: 1-12.
- Angrist M. Open window: when easily identifiable genomes and traits are in the public domain PLoS One 2014; 9(3): e92060.
- Lunshof JE, Church GM, Prainsack B. Raw personal data: providing access. Science 2014; 343 (6169): 373-374.
- Hayden EC. Ethics: Taboo genetics. Nature 2013; 502 (7469).
- Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying Personal Genomes by Surname Inference. Science 2013 339 (6117): 321–4.
- Zawati MH, Borry P, Howard HC. Closure of population biobanks and direct-to-consumer genetic testing companies. Human Genetics 2011 Sep;130(3):425-32.
- Gitschier J. Inferential genotyping of Y chromosomes in Latter-Day Saints founders and comparison to Utah samples in the HapMap project. Am J Hum Genet 2009 84(2):251-8.
- Caulfield T, Fullerton S, Ali-Khan SE et al. Race and ancestry in biomedical research: exploring the challenges. GenomeMedicine 2009; 1(1): 8.
- Knerr S, Ramos E, Nowinski J, Dixon K, Bonham VL. Human difference in the genomic era: Facilitating a socially responsible dialogue. BMC Medical Genomics. 2010 May 26;3:20.
- Lee SSJ, Mountain J, Koenig B et al. The ethics of characterizing difference: guiding principles on using racial categories in human genetics. Open letter. Genome Biology 2008; 9:404.
- Sankar P, Cho MK, Mountain J. Race and ethnicity in genetic research. American Journal of Medical Genetics, Part A, 2007 May 1;143A(9):961-70.
- Barbujani G. Human races: Classifying people vs. understanding diversity. Current Genomics 2005; 4: 215-226.
- Williams SR. Genetic genealogy: the Woodson family's experience. Culture, Medicine and Psychiatry. 2005; 29(2): 225-52.
- Social Studies of Science, October 2008. A special issue discussing ongoing debates concerning race, genomics, and disease.
- Genetics for the Human Race A special issue of Nature Genetics published in November 2004.
- Kaiser, Jocelyn. Pioneering Icelandic genetics company denied approval for data-mining plan Science Insider, 20 June 2013.
- Hern, Alex. Are there ethical lapses in the Times' story on William's "Indian ancestry"? New Statesman, 14 June 2013.
- Johnson, Bobbie. How a spit of royal DNA makes money for Rupert Murdoch. Stories that Matter, 14 June 2013.
- Middleton, Anna. Attention The Times: Prince William’s DNA is not a toy. The Conversation, 14 June 2013.
- Retassie, Ruth. Genetic test to assess 'racial purity' of Hungarian MP condemned. Bionews, 18 June 2012.
- Pauwels, Eleonore. Leave me your DNA... and I'll 3D-print your face . The Guardian, 1 June 2013.
- Corpas, Manuel. A genome blogger manifesto GigaScience 2012, 1:15.
- King, Elizabeth B. Ludwin. A conflict of interests: privacy, truth, and compulsory DNA testing for Argentina's children of the disappeared. Cornell International Law Journal 2011, Volume 44, pp536-568.
- Harmon, Amy. Indian Tribe Wins Fight to Limit Research of Its DNA. New York Times, 21 April 2010.
- Sahota, Puneet Chawla. Genetics research and American Indian/Alaska Native communities
- Schonfeld, Erick. It's my DNA, and I'd like to keep it that way Business 2.0, 27 September 2002 (Internet Archive version)
- Blog.Bioethics.gov The blog of the Presidential Commission for the Study of Bioethical Issues
- Genomethics blog A blog from Anna Middleton, a social scientist and registered genetic counsellor researching ethics and genomics at the Wellcome Trust Sanger Institute, Cambridge, UK
- Genealogical Privacy blog
Relevant blog posts
- Keeping it secret: revealing the secrets in your family history by Ashley Barnwell. Guest blog post on the Ancestry UK blog, 15 December 2017.
- Affiliate links in genetic genealogy by Leah La Perle Larkin, The DNA Geek, 10 August 2017.
- The ethics of criticism by Judy Russell, The Legal Genealogist blog, 18 January 2017.
- Whose genes are they anyway? a guest blog post by Kat Arney on the Naked Security blog, 29 December 2016.
- Respecting the privacy of DNA test takers by Judy Kellar Fox. Board of Certification for Genealogists Springboard News and Notes, 8 October 2015.
- A matter of consent by Judy Russell, The Legal Genealogist blog, 25 January 2015.
- The ethics of DNA testing by Judy Russell, OnBoard 21 (January 2015): 1–2, 7.
- A code of conduct for historians by Susannah Lipscomb. History Today, 3 December 2014.
- Nicholas Wade and race: building a scientific facade by Jennifer Raff, Violent Metaphors blog, 21 May 2014
- Games grandparents play by Judy Russell, The Legal Genealogist blog, 29 September 2013. (An article on the ethics of DNA tests for grandchildren.)
- Caught in the genetic social network by Anders Sandberg, Practical Ethics blog from Oxford University, 3 July 2013
- DNA: life after death by Judy Russell, The Legal Genealogist, 30 June 2013.
- No (DNA) bullying by Roberta Estes, DNAeXplained, 15 May 2013.
- Racing to the wrong conclusion Genealogy for the Everyman blog, 9 February 2013. The article provides a good summary of the problem of assigning arbitrary labels to "races".
- The ethics of DNA testing by Judy G Russell, The Legal Genealogist, 18 November 2012.
- Why both sides are wrong in the race debate by Kenan Malik, Pandaemonium blog, 4 March 2012
- Does DNA Link 1991 Killing to Colonial-Era Family? by Blaine Bettinger, The Genetic Genealogist, 11 January 2012.
- If you are going to "debunk" race with gene testing, please stop by John Hawks, John Hawks weblog, 1 August 2005.
- Cleary J. The ethical and legal aspects of genetic genealogy. In: Holton GS (ed). Tracing Your Ancestors Using DNA. Pen and Sword, 2019, pp13-31.
- Lacopo MD. Uncovering family secrets: the human side of DNA testing. In: Wayne DP (ed). Advanced Genetic Genealogy: Techniques and Case Studies. Cushing, Texas: Wayne Research, 2019 pp325-337.
- McHughen A. Some uncomfortable ethical dilemmas. In: DNA Demystified: Unravelling the Double Helix. Oxford University Press, 2020. Also available via Oxford Scholarship Online.
- Moore S, Rosenthal D and Robinson R. Ethical dilemmas. In: The Psychology of Family History: Exploring Our Genealogy. London: Routledge, 2020.
- Russell JG. Ethical underpinnings of genealogy. In: Wayne DP (ed). Advanced Genetic Genealogy: Techniques and Case Studies. Cushing, Texas: Wayne Research, 2019, pp303-324.
- Australasian Association of Bioethics and Health Law
- Presidential Bioethics Commission (US)
- Committee on Publication Ethics (UK)
- Indigenous People's Council on Biocolonialism (US)
- Nuffield Council on Bioethics (UK)
- PHG Foundation (UK)
- UK Research Integrity Office
- Center for Transdisciplinary ELSI Research in Translational Genomics (US)
- Issues in Genetics, a website maintained by the US National Human Genome Research Institute which provides information on the policy, legal and ethical issues in genetic research
- WHO - Ethical, legal and social implications (ELSI) of human genomics
- The Ethical, Legal and Social Implications (ELSI) Research Program
- Etiquette and ethics links from Cyndi's List
- HumGen International An international database on the legal and socio-ethical aspects of population genetics provided by the Centre of Genomics and Policy at McGill University, Quebec, Canada
- Ethics and genetics