McKinney C., Newton G., Nathan V., and McInerney-Leo A. HGSA 2024 Special Interest Group Meeting Australasian Society of Genetic Counsellors (ASGC) 10 August 2024
Background: Direct to consumer genetic testing (DTC-GT) has expanded exponentially in the past decade. Genetic counselling professionals (GCPs) are in a unique position to help people understand and contextualise DTC-GT, with their psychoeducational expertise. Little is known, however, about GCPs’ experience with, attitudes towards, and capacity to meet the needs of DTC-GT consumers.
Aims: To consolidate what is known about how GCPs currently support DTC-GT customers, understand counsellor and consumer needs, and identify research gaps.
Methods: A scoping review was conducted in PubMed, Medline, EMBASE, Scopus, CINAHL, PsychInfo, and ProQuest Theses and Dissertations, capturing empirical research on DTC-GT and counselling from 2007-2024.
Results: Of the thirty-seven relevant articles identified, the majority assessed the views of GCPs working in clinical settings. GCPs felt that consumers should be offered counselling to facilitate informed consent and result interpretation but had mixed views on whether this was within the purview of clinical practice. Many felt it was the responsibility of companies to provide counselling but were concerned about conflicts of interest. Greater input by the profession was called for, as well as resources and practice guidelines around counselling consumers.
Conclusions: Despite the consensus that genetic counselling should accompany DCT-GT, little is known about DTC-GT companies’ provision of counselling. GCPs also questioned the quality of industry-provided consumer support. Further research is needed to understand the nature and efficacy of company-provided counselling to DTC-GT consumers. To our knowledge, this is the first review to evaluate attitudes towards and impact of DTC-GT, on genetic counselling professionals.
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