'Pretty Pioneering-Spirited People': Genetic Counsellors, Gender Culture, and the Professional Evolution of a Feminised Health Field, 1947-1980

Stillwell, Devon

doi:10.1093/shm/hku069

Cited by 5 publications

(7 citation statements)

References 3 publications

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“…We believe there is something more taking place here, and that is an ethic of care in genomics research that draws in large part from the training and professional culture of genetic counselors 16 . We observed three dimensions to this ethic of care.…”

Section: Engagement In Translational Researchmentioning

confidence: 82%

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Childerhose

Finnila

et al. 2019

Ethics & Human Research

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The expansion of both formal and informal frameworks of “engaged” research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to “do research differently” in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.

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Section: Engagement In Translational Researchmentioning

confidence: 82%

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Childerhose

Finnila

et al. 2019

Ethics & Human Research

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“…Considering the concept of role substitution and the way in which it was applied in the genetics clinic, it is not surprising that the addition of GAs had little impact on MD patient volume. In the early days of the profession, GCs were delegated tasks that were of low importance to physicians and did not require a GC’s specialized training (e.g., obtaining records and preparing pedigrees) (Stillwell, 2015). Similarly, in the Winnipeg clinic, the GCs’ role gradually shifted from clinical coordination toward providing genetic counseling; however, many also retained administrative, organizational, and/or clinical coordination responsibilities, until these were assumed by GAs (Shannon Chin, Clinical Service Leader at Shared Health Program of Genetics and Metabolism, personal communication, January 2018).…”

Section: Discussionmentioning

confidence: 99%

Section: Clinmix Toolmentioning

confidence: 99%

Integrating genetic assistants into the workforce: An 18‐year productivity analysis and development of a staff mix planning tool

Krutish

Balshaw

Jiang

et al. 2022

Journal of Genetic Counseling

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In recent years, genetic (counseling) assistants have been integrated in the genetics workforce, such that one‐third of genetic counselors now report working with a genetic assistant. While several studies showed that adoption of the genetic assistant model leads to an increase in patient volume, the impact of this role substitution has not been studied quantitatively beyond the cancer genetics workforce. This study utilized 18 years of data from a publicly funded genetics clinic with multiple specialties and varying staff mix. Time series regression modeling was applied to describe the evolving impact of genetic assistants on genetic counselor and clinical geneticist productivity (measured as patient volume). The regression models suggest that the integration of genetic assistants led to a sustainable increase in genetic counselor patient volume, while clinical geneticist patient volume was unaffected. Importantly, the models also demonstrated an interaction between the number of genetic counselors and genetic assistants, whereby the impact of adding a genetic counselor was greater as more genetic assistants were employed in the clinic, and vice versa. The main regression model was used to create “ClinMix: A Genetics Staff Mix Planning Tool,” an Excel application that allows users to explore how different staffing plans could affect patient volume, by applying the parameters estimated from this data or their own. We hope this report and the ClinMix tool can be employed by the genetics workforce to advocate for further implementation and evaluation of genetic assistant positions. Adoption of the genetic assistant model may provide clinics the support needed to meet increasing service delivery demands and subsequently foster genetic counselor practice at “top of scope.”

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“…The fourth edition of Practical Genetic Counselling (1993) explained that, 'genetic counselling should preferably be undertaken by people who are medically trained, largely for the reason that it is quite impossible to separate the actual counselling from the associated aspects of clinical diagnosis' (Harper 1993, 140). He had misgivings about what he saw as 'US-style' genetic counsellor, owing to the apparent animosity that had developed between some professional groups in the USA (Stern 2012;Stillwell 2015). 42 Harper was by no means alone in his concerns; many regional centres were resistant to the new degree and wary of employing its graduates.…”

Section: Original Researchmentioning

confidence: 99%

Making the ‘genetic counsellor’ in the UK, 1980–1995

Bangham

2023

Med Humanities

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The professional identity of the ‘genetic counsellor’ first took shape in the UK in the early 1990s, when the University of Manchester established the country’s first masters-level training course. Postwar, genetic counselling had been carried out by (male) clinical geneticists, who, alongside their research, clinical and field-building activities, met patients and families to discuss inherited conditions and risk estimates, and who sometimes advised parents whether to attempt or continue pregnancies. By contrast, the new cohort of students in Manchester in the 1990s were not medically trained, were mostly women, and were schooled in the psychological and social consequences of genetic testing and diagnosis, as well as methods for the care, support and emotional management of patients and families. This was a significant change both in the practices of ‘genetic counselling’ and who was expected to practise it. Focusing on a small section of this history, between 1980 and 1995, this paper describes some of the historical threads that contributed to this change. It charts the early work of genetic nurses and social workers, who in the 1980s carved out distinctive roles within National Health Service genetics centres. It describes the separate, specialist provision developed by sickle cell and thalassaemia counsellors, who developed new approaches in dialogue with racialised and underserved patient communities. It examines growing interest in the late 1980s and early 1990s in the tacit social and cultural conditions of genetic counselling encounters, and how this cohered with attention from disability scholars, psychologists and social scientists. By describing these historical contributions, this paper explores how the intersecting gendered, racialised and disciplinary politics of clinical genetics shaped the new professional role of the ‘genetic counsellor’.

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'Pretty Pioneering-Spirited People': Genetic Counsellors, Gender Culture, and the Professional Evolution of a Feminised Health Field, 1947-1980

Cited by 5 publications

References 3 publications

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Integrating genetic assistants into the workforce: An 18‐year productivity analysis and development of a staff mix planning tool

Making the ‘genetic counsellor’ in the UK, 1980–1995

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