Ethical dilemmas associated with genetic testing: which are most commonly seen and how are they managed?

McLean N, Delatycki MB, Macciocca I, Duncan RE.

Source

1] Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia [2] The Bruce Lefroy Centre, Murdoch Childrens Research Institute, Parkville, Victoria, Australia.

Abstract

Purpose:The aim of this study was to document the range and frequency of ethical dilemmas associated with genetic testing encountered by genetic health professionals and to determine the strategies used to manage them.Methods:An online survey was used to document how often the 11 key ethical dilemmas have been encountered; whether any additional dilemmas have been encountered; and how these dilemmas have been managed. Members of the Australasian Association of Clinical Geneticists, Australasian Society of Genetic Counsellors, and genetic social workers practicing in Australia and New Zealand were invited to participate.Results:A total of 102 responses were received (31% response rate). Respondents had encountered all of the 11 ethical dilemmas included in the survey, and 18 respondents had encountered 14 additional dilemmas. Respondents encountered an average of 2.2 dilemmas per year of practice. Peer and clinical supervision were the most common strategies used to manage dilemmas, and seeking advice from clinical ethics committees was rare. Occasionally, respondents facilitated practices they deemed unethical as a consequence of client deception.Conclusion:Ethical dilemmas of genetic testing are encountered regularly in clinical genetics practice. Evidence provided by our study can assist in targeting training, support, and guidance to help genetic health professionals navigate such dilemmas in the future.Genet Med advance online publication 15 November 2012Genetics in Medicine (2012); doi:10.1038/gim.2012.138.