A Comparative Analysis of Ethical and Professional Challenges Experienced by Australian and U.S. Genetic Counselors

Abstract

Ethical issues are an inevitable part of genetic counseling practice. Prior research identified 16 domains of ethical and professional challenges encountered by practitioners in the United States. In order to further validate these domains, the present study surveyed Australian genetic counselors. Sixty-three respondents rated the frequency with which they encountered each domain, and 39 individuals also provided personal anecdotes detailing their most challenging ethical and professional dilemmas. Every domain reportedly was experienced by the Australian sample. However, there were some differences between Australian respondents and U.S. genetic counselors in frequencies of domain occurrence, and in strategies recommended for resolving them. Several anecdotes illustrate challenging situations due to Australia's geography, universal healthcare system, and the genetic counseling profession's evolution in that country. The results generally validate domains identified for U.S. genetic counselors. They further suggest that certain ethical issues may manifest in ways unique to a given country, and therefore they must be addressed in a culturally-appropriate manner.

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

“…Management strategies identified in previous studies were used as a guide for drafting the range of management strategies to include in the survey for each ethical dilemma, 27,28 although respondents were also able to specify additional management strategies if the list provided in the survey was not exhaustive. If the ethical dilemma related to the provision of a genetic test (as opposed to, for example, a dilemma about whether to disclose information obtained as a consequence of a genetic test), respondents were also asked how often they had refused to provide such a test.…”

“…Also, no definition of these terms was given to respondents in these studies, and therefore respondents' interpretation of the terms "frequent" and "not frequent" might have varied. [26][27][28] Clarke and colleagues 14 used a prospective study design to document 65 instances of nondisclosure of genetic status to at-risk relatives over a 12-month period in the United Kingdom and in two Australian centers. However, nondisclosure was the only ethical dilemma related to genetic testing that was included in that study.…”

“…[26][27][28] The original survey revealed a variety of strategies for managing ethical concerns, including: referring to another professional, referring to professional guidelines, disregarding personal beliefs or biases, and determining boundaries within the family. 28 Australian genetic counselors were found to use 8 of the 11 strategies referred to, 27 and Spanish genetic counselors were found to use 10 of the strategies and one additional strategy-"study of the family group. "…”

“…[26][27][28] The original survey revealed a variety of strategies for managing ethical concerns, including: referring to another professional, referring to professional guidelines, disregarding personal beliefs or biases, and determining boundaries within the family. 28 Australian genetic counselors were found to use 8 of the 11 strategies referred to, 27 and Spanish genetic counselors were found to use 10 of the strategies and one additional strategy-"study of the family group. " 26 The finding of this study, that genetic health professionals commonly seek advice from their peers, contrasts with the survey of genetic counselors in Australia, which found that only a small proportion of genetic counselors (15.4%) would recommend discussion with other health professionals.…”

“…26 The finding of this study, that genetic health professionals commonly seek advice from their peers, contrasts with the survey of genetic counselors in Australia, which found that only a small proportion of genetic counselors (15.4%) would recommend discussion with other health professionals. 27 Although these previous surveys have provided some information about strategies for managing ethical dilemmas, they posed only hypothetical questions, asking respondents what they would advise a colleague to do when encountering an ethical dilemma but not what they do, or have done, in their own practice. This is a key difference between our study and these past studies.…”