The Genetic Counselor's Role in Managing Ethical Dilemmas Arising in the Laboratory Setting

Abstract

Ethical dilemmas are encountered commonly in the setting of the clinical genetic testing laboratory due to the complexity of genetic testing and the number of relevant stakeholders involved in the genetic testing process. Based on their clinical training and role within the laboratory, genetic counselors are uniquely equipped to identify and facilitate management of ethical dilemmas. This paper reviews the historical context of ethical theory and its application to the field of genetic counseling. Theoretical and applied ethics are explored in the context of dilemmas arising in the laboratory setting, with a focus on the role of the laboratory genetic counselor in managing ethical dilemmas. Two illustrative case examples are provided.

Diagnostic uncertainties, ethical tensions, and accounts of role responsibilities in genetic counseling communication

“…New diagnostic technologies for genomic testing such as exome sequencing no doubt offer promises but they generate certain kinds of significant uncertainties that pose ethical dilemmas both for genetic counselors in the clinic setting (Balcom et al, 2016) With regard to clients, some may foreground their perceptions of 'benefits of knowing' pertaining to new knowledge which has the promise of reducing uncertainty and/or in their pursuit of certainty about their own and family members' at-risk status. As can be seen in extract 4, CM claims he is not after information per se but in search of answers ('that one get answers').…”

“…New diagnostic technologies for genomic testing such as exome sequencing no doubt offer promises but they generate certain kinds of significant uncertainties that pose ethical dilemmas both for genetic counselors in the clinic setting (Balcom et al, 2016) and for clients in the clinic as well as family settings. A key aspect is that epistemic certainty that may be achieved through new technologies, such as secondary findings, does not necessarily come with treatment options and can thus be deemed practically irrelevant for counseling purposes.…”

“…In the clinic setting, there is a call for shifting the focus from reduction of uncertainty to management of uncertainty within a positive frame (Barlow‐Stewart, 2018; Newson, Leonard, Hall, & Gaff, 2016), while attending to emergent ethical dilemmas (Balcom, Kotzer, Waltman, Kemppainen, & Thomas, 2016). Framing is a key concept here.…”

Ethical and professional challenges encountered by Japanese healthcare professionals who provide genetic counseling services

“…Genetic counseling services in the Asia Pacific region are growing (Laurino et al, 2018). As genetic counseling services become more prevalent worldwide, it is important to identify the ethical and professional challenges that arise as providers and healthcare systems offer genetic counseling (Balcom, Kotzer, Waltman, Kemppainen, & Thomas, 2016; Clarke & Wallgren‐Pettersson, 2019).…”

Genetics and ethics

“…Finally, we want to remind readers that moral distress can occur in clinical geneticists and genetic counselors as a result of working in such emotionally charged situations, and there is an emerging body of literature that describes its occurrence both in clinic (Bernhardt et al 2010;McLean et al 2013) and in laboratory settings (Groepper et al 2015;Balcom et al 2016). Clinical genetics professionals are encouraged to identify resources to help when conflicts are identified-many hospitals are required to have an ethics board or committee, with trained biomedical ethicists, to help clinicians work through ethically challenging cases.…”