“Protection for the public, better use of resources and clearer lines”: Interviews with genetic counselors and their colleagues on the need for regulation in Quebec
Bibliographic record
Abstract
In Canada, the field of genetic counseling is rapidly evolving alongside the increasing integration of and demand for genetics in healthcare practice. In tandem, there is a growing body of literature advocating for the regulation of genetic counseling, as legal recognition can protect patients from potential risk of harm and provide counselors with support by legally defining their roles and duties. However, there is a need for empirical qualitative research regarding the risks and challenges associated with the current lack of regulation to help inform these discussions. This article presents findings from 23 interviews with genetic counselors and their professional healthcare colleagues in Quebec. Themes were identified via interdisciplinary social scientific and legal content analysis. Notably, all participants were in favor of regulation, for varied reasons. Participant responses highlighted legal, organizational, and structural risks and challenges associated with the lack of legal recognition. First, the lack of role clarity creates issues with genetic counselors' working relationships and public recognition. Second, the autonomy of practitioners varies significantly, raising risks of liability and clinical preparedness when counselors have high autonomy or perform controlled acts. Third, the lack of recognition ultimately exacerbates structural strains on delivery and access to care. Results indicate that legal recognition stands to foster safer and more efficient provision of genetics services by increasing public awareness, instituting title protection and accountability mechanisms, clarifying professional scope, and mitigating liability risks. To the best of our knowledge, this is the first qualitative study to bring practicing stakeholders from across genetics services to the discussion on the lack of regulation of genetic counseling. Findings support the continued pursuit of legal recognition in Quebec and can inform similar initiatives in other jurisdictions.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.011 | 0.018 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.037 | 0.015 |
| Scholarly communication | 0.006 | 0.002 |
| Open science | 0.003 | 0.003 |
| Research integrity | 0.004 | 0.005 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".