Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

The experiences of UK-based genetic counsellors working in mainstream settings

European Journal of Human Genetics volume 30, pages 1283–1287 (2022)Cite this article

Subjects

Abstract

Most UK-based genetic counsellors (GCs) work within clinical genetics services; yet there is a small and expanding group of GCs working within other clinical specialties, termed “mainstream” GCs. To our knowledge there have been no projects to date examining the experiences of mainstream GCs working in the UK. The aim of this workforce evaluation was to explore the experiences of mainstream GCs. Online surveys were sent to mainstream GCs to obtain general demographic information and baseline data regarding experiences of working in these roles. Those who completed the surveys were then invited to take part in online focus groups. Data was transcribed and analysed using thematic analysis to draw out major themes that arose from the discussions. Major themes were found to be: “Benefits”, “Challenges”, “Career Progression” and “Support”. Overall, participants expressed enjoyment of their roles and described key benefits of working in a clinical specialty, including autonomous working and developing expertise. Still, career progression was limited in many cases due to issues obtaining professional registration, lack of support, and unclear definition of the mainstream GC role. Findings are brought together as a list of suggestions to support this subset of the profession going forward. We hope these findings could be of utility to both employers and policymakers when advancing the national provision for mainstream genomic services.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on SpringerLink
  • Instant access to the full article PDF.

USD 39.95

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

Data availability

Full transcripts and survey responses available upon request by contacting the corresponding author.

References

  1. Abacan M, Alsubaie L, Barlow-Stewart K, Caanen B, Cordier C, Courtney E, et al. The global state of the genetic counseling profession. Eur J Hum Genet. 2018;27:183–97.

    Article  PubMed  PubMed Central  Google Scholar 

  2. AGNC. Career Structure for Genetic Counsellors and Support Roles [Internet]. 2021. Available from: http://Career Structure for Genetic Counsellors and Support Roles.

  3. Skirton H, Cordier C, Lambert D, Hosterey Ugander U, Voelckel M, O’Connor A. A study of the practice of individual genetic counsellors and genetic nurses in Europe. J Community Genet. 2012;4:69–75.

    Article  PubMed  PubMed Central  Google Scholar 

  4. AGNC. The Genetic Counsellor role in the United Kingdom [Internet]. 2020. Available from: https://www.agnc.org.uk/media/11727/the-genetic-counsellor-role-in-the-uk.pdf.

  5. Taverner N. AGNC UK Workforce Survey 2019 [Internet]. 2019. Available from: https://www.agnc.org.uk/media/11640/agnc-workforce-survey-2019.docx.

  6. Snape K, Wedderburn S, Barwell J. The new genomic medicine service and implications for patients. Clin Med. 2019;19:273–7.

    Article  Google Scholar 

  7. Middleton A, Marks P, Bruce A, Protheroe-Davies L, King C, Claber O, et al. The role of genetic counsellors in genomic healthcare in the United Kingdom: a statement by the Association of Genetic Nurses and Counsellors. Eur J Hum Genet. 2017;25:659–61.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Sanderson S, Hill M, Patch C, Searle B, Lewis C, Chitty L. Delivering genome sequencing in clinical practice: an interview study with healthcare professionals involved in the 100 000 Genomes Project. BMJ Open. 2019;9:e029699.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3:77–101.

    Article  Google Scholar 

  10. Braun V, Clarke V. Thematic analysis. APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological. 2012;:57-71.

  11. Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2017;24:9–18.

    Article  PubMed  PubMed Central  Google Scholar 

  12. WMA. WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects [Internet]. 2013. Available from: http://file:///C:/Users/EQ513/Downloads/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects.pdf.

  13. Patch C, Middleton A. Point of View: An evolution from genetic counselling to genomic counselling. Eur J Med Genet. 2019;62:288–9.

    Article  PubMed  Google Scholar 

  14. Skirton H, Cordier C, Ingvoldstad C, Taris N, Benjamin C. The role of the genetic counsellor: a systematic review of research evidence. Eur J Hum Genet. 2014;23:452–8.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

We would like to thank the participants of this study for their contributions.

Funding

No financial assistance was received in support of this study.

Author information

Author notes

  1. These authors contributed equally: Ellie Quinn, Katherine Mazur.

Authors and Affiliations

  1. Royal Brompton & Harefield Hospitals, London, UK

    Ellie Quinn

  2. Great Ormond Street Hospital, London, UK

    Katherine Mazur

Authors
  1. Ellie Quinn
    View author publications

    Search author on:PubMed Google Scholar

  2. Katherine Mazur
    View author publications

    Search author on:PubMed Google Scholar

Contributions

EQ and KM worked together to design the project including questionnaire and discussion guides for the focus groups. EQ was the interviewer and KM was the notetaker in the focus groups. EQ and KM both analysed the transcripts and performed thematic analysis. EQ and KM wrote the paper together.

Corresponding author

Correspondence to Ellie Quinn.

Ethics declarations

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Appendix 1

Appendix 1

The Mainstream & Specialist Genetic Counsellor Journal Club was set up in October 2020. It is a virtual monthly journal club for any genetic counsellor in the UK that works in a mainstream GC setting or in an isolated role.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Quinn, E., Mazur, K. The experiences of UK-based genetic counsellors working in mainstream settings. Eur J Hum Genet 30, 1283–1287 (2022). https://doi.org/10.1038/s41431-022-01158-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Version of record:

  • Issue date:

  • DOI: https://doi.org/10.1038/s41431-022-01158-y

This article is cited by

Search

Advanced search

Quick links