Evidence map›Paper›PMID 39165077›Full record

ArticleJournal of genetic counseling2025

"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.

Terese Knoppers, Cassandra E Haley, Dimitri Patrinos, Ma'n H Zawati

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Terese KnoppersCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.ORCID 0000-0001-8912-1906
Cassandra E HaleyCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
Dimitri PatrinosCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.ORCID 0000-0002-8696-8244
Ma'n H ZawatiCentre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.ORCID 0000-0002-8905-6259

Funding

Fonds de recherche du Québec-Santé Junior 1 Research Career AwardRéseau de Médecine Génétique Appliquée Les impacts de l'absence de reconnaissance juridique des conseillers en génétiques au Québec
6 · The paper itself

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.

Indexed as

CounselorsGenetic CounselingFemaleHumansInterviews as TopicMaleQuebecgenetic counselinginterdisciplinarylegal recognitionpolicyqualitativeregulation

Identifiers

PMID39165077
PMCPMC11907099

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.