From ISOGG Wiki
This page provides a selection of resources on the subject of ethics which are particularly applicable to genetic genealogists.
- 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 Genetitcs, Part A, 2007 May 1;143A(9):961-70.
- 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.
- 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
- 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
- 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
- BritainsDNA, The Times and Prince William – the perils of publication by press release by Debbie Kennett, Cruwys News blog, 19 June 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.
- Does DNA Link 1991 Killing to Colonial-Era Family? by Blaine Bettinger, The Genetic Genealogist, 11 January 2012.
- Everyone has two family trees: a genealogical tree and a genetic tree by Blaine Bettinger, The Genetic Genealogist, 10 November 2009.
- If you are going to "debunk" race with gene testing, please stop by John Hawks, John Hawks weblog, 1 August 2005.
Codes of conduct and guidelines
- ISOGG Project Administrator Guidelines
- Family Tree DNA Group Administrator Guidelines
- Board for Certification of Genealogists' Code of Ethics and Conduct
- Association of Professional Genealogists' Code of Ethics
- National Genealogical Society's Standards and Guidelines for Genealogists
- Council for the Advancement of Forensic Genealogy: Standards of Practice and Conduct
- The Society of Genealogists' Principles of Genealogical Research
- IAJGS Ethics for Jewish Genealogists Guidelines from the International Association for Jewish Genealogists
- Personalised healthcare: Medical profiling and online medicine: the ethics of 'personalised healthcare' in a consumer age. A report from the Nuffield Council of Bioethics.
- 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
- Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes Council of Europe, Strasbourg 2008.
- Genome Ethics A survey being conducted as part of a study by ethics researchers at the Wellcome Trust Sanger Institute in Cambridge, England.
- Australasian Association of Bioethics and Health Law
- Presidential Bioethics Commission (US)
- 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