‘A Developing Role’

What roles did genetic nurses and genetic social workers have in the NHS? By 1980, clinical genetics in the NHS had been expanding for three decades, and had grown from a few ad hoc units run by clinicians with special interests in genetics, to a total of 16 genetic centres across the ‘regions’ of the UK, led by trained clinical geneticists (Coventry and Pickstone 1999; Harper 2020). A key moment in the expansion and reframing of clinical genetics had been the regional reorganisation of the NHS in 1973, in advance of which some clinical geneticists had pushed for greater resources (Webster 2002, chapter 2). Clinicians consulted prior to the NHS Reorganisation Act argued that the adoption and expansion of prenatal testing, and the change in the UK abortion law in 1967, had put pressure on existing services. By the early 1980s, regional provision was still uneven, but the more established genetic services operated in teams of consultant and training clinical geneticists, laboratory staff, administrative staff, and one or more nurses, health visitors or social workers.11 The latter were sometimes referred to in the 1980s as ‘auxiliary’, or ‘non-medical’ health workers (so-called because they were not trained doctors).

Who were these ‘auxiliary’ workers and what did they do? The earliest such appointment was apparently made in 1959 by Cedric Carter, who ran genetics clinics at Great Ormond Street Hospital and a Medical Research Council unit at the Institute of Child Health. Carter recruited Kathleen Evans, a medical social worker at the hospital, who prepared information on clients and their families prior to clinics, who talked to the families before they met with Carter, and who accompanied Carter in the clinics (Reynolds and Tansey 2010, 29).12 One geneticist later recalled that Evans’s role was to soften Carter’s ‘rather perfunctory style’; he remembered Evans ‘rush[ing] out and comfort[ing] somebody in the corridor because they were visibly upset’ (Reynolds and Tansey 2010, 30). Colleagues recalled Evan’s role in the clinic as ‘informal’, a feature that may have been understood as crucial to her work (Egginton and Thomas 2021), and we have few clues as to the day-to-day encounters she had with clients and families.

We know more about the responsibilities of the first so-called ‘genetics field worker’ in the UK, a woman named Edith Quinn who was a senior registered nurse when appointed in 1971 by clinical geneticist Rodney Harris to work in the Manchester Department of Medical Genetics. Two years later, he and Quinn coauthored a memo explaining her multiple responsibilities in the department’s research and clinical work (Harris and Quinn 1973). Like Evans, Quinn prepared the ground ahead of clinics, obtained hospital notes and other records, met clients and relatives, and constructed preliminary family trees. She was present at clinics when Harris met families to take a detailed medical history and make examinations, and she would order chromosome and other tests. Harris and Quinn used the phrase ‘field work’ apparently to refer to the journeys that Quinn made outside the confines of the clinical setting—her trips to family homes and to the inpatient and outpatient clinics in local hospitals to collect information and blood specimens.13 In making a case for a more widespread role for ‘genetic field workers’ in NHS genetic centres, Harris commented: ‘it is not possible to carry out effective genetic counselling without the services of a trained field worker such as Mrs. Quinn’ (Harris and Quinn 1973).

Others evidently agreed with Harris, and over the next decade, centres around the country brought in nurses and social workers to take on similar roles as those of Evans and Quinn. As their work gradually began to be acknowledged in print, colleagues described the expertise of nurses and social workers in gauging the attitudes and responses of families, and offering appropriate support. In the textbook Practical Genetic Counselling (1981), Cardiff-based clinical geneticist Peter Harper praised the important work by ‘auxiliary workers’ in clinical genetics, noting that they were uniquely able to ‘detect problems that the family have not spoken about, and ensure that they have actually understood what the person giving genetic counselling thinks they have’. But Harper saw these activities as distinct from ‘genetic counselling’, which was the preserve of clinical geneticists.14 In Harper’s view, ‘counselling’ was inseparable from diagnosis and the communication of risk estimates (Harper 1981, 116).

Harper was not alone. In services across the country, nurses performed supporting roles to clinical geneticists, who had authority over clinics, and made decisions regarding the information that needed to be collected from which clients and families.15 But by the mid-1980s, this was beginning to change, although in different ways and at varied paces in different places. At the Nottingham service, for example, genetic nurses had previously tended only to meet families in clinics and during follow-ups, but in the mid-1980s, they formally changed the sequence of encounters experienced by families, so that genetic nurses could establish relationships prior to clinical appointments (Guilbert 2021). Such meetings, at the hospital or in the home, were partly to gather family information—such as family tree, blood for tests, or family photographs—but also functioned to help the genetics team understand how a family might respond to the information they were being given. As genetic nurse Penny Guilbert put it, ‘[we would] get [an] impression of what sort of value base they were working from, how did that family tick and how could the information that we might be sharing with them be integrated into that family setup’ (Guilbert 2021).

During the 1980s, published accounts began alluding to the ‘psychological’ aspects of nurses’ work. A Clinical Genetics Society report published in 1982 explained that nursing staff hired to the genetics services should have experience in community medicine, paediatrics and obstetrics. People with this training, it explained, ‘will be aware of the many problems resulting from genetic disease in families, and should be sensitive to the psychological implications for the affected individuals and their relatives’ (Fitzsimmons et al. 1982, 11). Looking back, genetic nurses reflected extensively on the value of psychological support that they gave to families. ‘To expect [families] to come through just to a traditional outpatient appointment with nothing in the terms of care, so to speak, is probably not going to help them to integrate or adjust … so it was about facilitating that adjustment process’ (Guilbert 2021).

The growing visibility of these practices was driven partly by a new forum that genetic nurses and social workers created in the late 1970s for discussing and comparing practices with professional peers. In 1980, they formalised their meetings by establishing the Genetic Nurses and Social Workers Association (GNSWA, pronounced g-nas-wa). Twenty people attended the first meeting, held in September 1980, and they travelled from the genetic services in Cardiff, Edinburgh, Belfast, Nottingham, Manchester, Preston and Cheshire. Eleven were nurses or health visitors, eight were social workers and one was a psychologist (Weetman 1995). Subsequently GNSWA hosted regular meetings around the country where members shared information about different conditions, case histories on specific families and their experiences in managing families.16

In 1988, genetic nurse Sally Farnish reported the results of a survey by GNSWA in the Journal of Medical Genetics, under the title, ‘A Developing Role in Genetic Counselling’. Farnish reported that although workers were still widely scattered, often worked in isolation, and had an assortment of job titles, they were now widely recognised as invaluable to the genetic services—especially their skills in establishing crucial relationships with families and clients and in delivering important psychological and material support (Farnish 1988). The growing visibility and autonomy of genetic nurses seems to have occurred in line with calls for nurses in the NHS more generally to be seen less as the ‘doctor’s handmaiden’, and more as a distinct class of professionals for whom ‘care’ was central and visible (Smith 1992, 8–9; McFarlane 1977). Care, psychological awareness and emotional management were new vocabularies for practices of genetic counselling that would take on clearer shape and greater prominence in the 1990s.

Sickle cell and thalassaemia counselling in the 1980s

In the 1980s, another quite distinct group of nurses and doctors began creating spaces, methods and professional roles to support families and patients affected by a specific class of inherited condition—the ‘haemoglobinopathies’, SCD and thalassaemia. Entirely separate from the regional genetics services, and for many years supported only with short-term funding, sickle cell and thalassaemia clinics defined and employed the UK’s very first professional ‘counsellors’ for inherited conditions. The new clinics developed practices of communication and support tailored to the needs of people experiencing ignorance and racism in the healthcare and welfare services. There are now several rich histories of SCD and thalassaemia in the UK; therefore, here I focus only on what ‘counselling’ meant in these contexts, and who delivered it.17

In the 1960s and 1970s, ignorance of SCD within the NHS meant that testing was sporadic and diagnoses rare.18 For those entering hospital with agonisingly painful crises, there were huge barriers to obtaining effective pain relief. Sufferers asking for strong painkillers were often dismissed by hospital staff as drug addicts. Many healthcare professionals seriously underestimated the severity of the condition, resulting in the death of some patients in hospital waiting rooms.19 Moreover, many patients remained unclear about the implications of the condition's genetic character. One recalled the acute uncertainty they experienced in the early 1970s: ‘[there was] nothing really there to tell me how as a sickle-cell patient—how I could deal with it—how I could live with it—what it meant for marriage and so on—if I had children what were the implications—nothing to tell me about it’ (quoted in Nathoo 2001, 19).

Soon, community activists and a small number of healthcare professionals began advocating for specialist centres to support clients and families with SCD—citing ‘counselling’ as a crucial part of the proposed provision.20 In part building on the work of the London-based charity Organisation for Sickle Cell Research (OSCAR) founded by SCD patient activist Neville Clare, the first sickle cell and thalassaemia centre was established in 1979 at Willesden Hospital, in the north-west London borough of Brent, by Irish-Nigerian nurse health visitor Elizabeth Nneka Anionwu and Yugoslavian-British haematologist Milica Brozović.21 The clinic consisted of two rooms in the Willesden Hospital, where staff ran an open-door blood testing facility in collaboration with the hospital haematology department.22 Soon clinics were also established in Lambeth, Manchester and Liverpool, and by 1985 there were seven across the UK. They were all ad hoc, in the sense that they had been variously established through the collaborative efforts of voluntary organisations, community relations councils, community health councils, individual health visitors, as well as departments of haematology and child health and community medicine (Prashar, Anionwu, and Brozović 1985). For many of these clinics, the only employed member of staff was the ‘sickle cell counsellor’ or ‘thalassaemia counsellor’, who was almost always a qualified nurse health visitor.

Staff at these early clinics had to define this counselling role for the very first time. Anionwu recalls that she had not initially thought it was the clinic’s role to give ‘genetic’ counselling as such, but that her practices were changed by the families she cared for:

We were concerned with the clinical, the nursing (particularly for me) the nursing care, of patients in the hospital. Also, with my health visitor hat on I was concerned to support the families. No, it wasn't genetic counselling support at that point. I mean it was to support the family. However, [ it turned out that the families wanted ] the provision of information and support. And what were some of the questions they always asked? How did I get it? How come I've only got one child with it? And my other children don't have it? If I have more children, will they get it? Genetic counselling! (Anionwu 2021b)

Anionwu’s broad approach to counselling was in part influenced by the work of sickle cell counsellors in the USA. Finding little advice on SCD in the UK, in the mid-1970s Anionwu travelled to Los Angeles, where she visited one of the sickle cell centres recently established with federal funds (Wailoo 2001, chapter 6; Nelson 2011). She was struck by the very broad support service given to local families, later citing in particular what she had learnt from an African American sickle cell nurse practitioner called Sylvia Lee (Anionwu 2021a, 244). In a return visit to the USA in 1978, Anionwu attended a course on sickle cell counselling at Oakland’s Children’s Hospital Medical Center of Northern California; and she recalled how profoundly useful it was to compare notes with African-American nurses and social workers (Anionwu 1996, 170). Later, she explained: ‘[I] was influenced by what I saw in the States, but also just common sense. You included everything’ (Anionwu 2021b).

Counsellors in other sickle cell and thalassaemia clinics took a similar approach. Lola Oni, who started work at the Lambeth clinic in 1982, recalled:

It wasn’t just the genetics. Even if you’re talking to a couple who are at risk of having a child with sickle cell disease … issues will come up that will be to do with their housing problem or this problem or that problem and you link them with social services … you may need to go and do a home visit … [o]r you may need to link with the school, their child’s school. …[Y]es, it is very much a holistic approach in the way in which we work with these families. (Oni 2022)

For Oni and Anionwu, the provision of genetic information was inseparable from broader forms of care and support for individuals and families. This attention to the breadth of counselling encounters also came to include the clinical environment in which encounters happened. Oni argued that the character of the setting was crucially important to the effectiveness of the clinic. Patients themselves, they said, did not want to visit a clinic in a hospital—which for many was associated with the experience of pain and crises—rather, it needed to be in the community, so that, as she put it, the community had ownership of it:

The Lambeth centre was actually in the community … Opposite the bus stop … People used to walk in just to use the loo. And then they would say ‘oh, I’ve always wanted to know about sickle’. ‘Oh, did you? Here’s a leaflet, I’ll talk to you about it. Have you ever been tested? Do you know what your haemoglobin status is?’ ‘No, I don’t’. ‘Do you want to be tested?’ Voila. (Oni 2022)

The experiences of her patients made Oni vividly aware of how much the environment of counselling and support encounters mattered. Indeed, SCD is a genetic condition with a physiological basis, but patients’ experiences of it were defined by widespread ignorance of the condition, lack of treatments, poor understanding of the pain suffered by patients, structural racism, the racism of some healthcare professionals, the lack of funding for specialist care, and the extensive social and political marginalisation of the communities to which many belonged, which in turn affected education, housing and employment. The broad and practical counselling practices developed by those in the clinics were direct responses to these experiences. Although the specialism and holism of these services have remained important and appropriate for these conditions, the historical separation of these services from the mainstream genetics services is emblematic of the way that some groups have been left out of the construction of ‘clinical’ genetics. Nevertheless, in the next section I shall explain how, although SCD and thalassaemia counselling remained separate from that offered in the mainstream genetics services, haemoglobinopathy counsellors identified tacit aspects of encounters that would have a lasting impact on the development of genetic counselling more generally.

Genetics meets ‘ethnicity’

During the 1980s, Anionwu and other haemoglobinopathy counsellors had begun to pay close attention to the ways in which the so-called ‘ethnic’ identities of clients and families affected their encounters with healthcare professionals.23 In the late 1980s, she and a group of colleagues at the Middlesex Hospital became interested in the outcomes of counselling prior to prenatal diagnosis, and drew attention to the significance of what they called ‘cultural, linguistic, religious, social and economic factors’ (Anionwu et al. 1988, 771).24 Anionwu’s attention was also drawn to the social identities of the health professionals themselves. Writing a few years later, she discussed the theme of ‘ethnicity’ in counselling interactions, recounting her own experiences working with patients from the local Gujarati community in Brent (Anionwu 1996).25 Related to the issues of language and religion that she had observed in Brent, Anionwu recalled that the nurses and social workers she had visited in Oakland, California had strongly held the view that ‘culturally appropriate sickle cell services were more suitably offered by black health workers’ (Anionwu 1996, 170).

Anionwu surveyed the experiences of haemoglobinopathy counsellors in clinics around the UK, and found that an overwhelming majority had said that they felt their own ‘ethnic origin’ to be relevant to counselling encounters (Anionwu 1996). Respondents variously commented that matching the ethnic identity of counsellors and patients improved communication, established better report and enabled ‘understand[ing] and respect [of] culture, health beliefs’. One added ‘Many social/psychological and cultural implications of SCD/thalassaemia … colour counselling process[es]’; another wrote, ‘Ethnic origin is always relevant and has an impact on all interactions, needs to be acknowledged, looked at continuously’. Some respondents particularly noted the significance of ‘racism: barriers may exist between white professionals and black and minority clients’ (Anionwu 1996, 181).26

Anionwu’s observations had shifted her attention to the recruitment of staff. By 1985 the Brent clinic obtained NHS funding for two additional counsellors, one of whom was paediatric nurse Nina Patel, herself from India and fluent in Gujarati. In 1986, the Brent clinic produced a poster, that Anionwu hoped would ‘publicise the existence of African, Caribbean and Asian staff’ (Anionwu 1996, 172). The carefully designed poster featured smiling, informal black-and-white portraits of the three counsellors, and prominent positioning of (only) their first names, ‘Marvelle, Elizabeth and Nina’. The poster also showed smaller snapshots of the counsellors interacting with patients, in person or on the telephone. The poster was funded by the Brent Race Relations Unit, and distributed to general practice surgeries, libraries and community centres.

Another health visitor and counsellor, Verna Davis, founded and ran the Manchester Sickle Cell and Thalassemia Centre (established in 1984), and later reflected on the significance of cultural identities in the centre. She recalled, ‘[genetic counselling] is a very emotive subject; it’s one that affects reproductive choices, there are cultural issues, religious issues … and I didn’t think it was adequate trying to interpret through a younger member of the family, a husband’ (quoted in Valier and Bivins 2002). Like Anionwu in Brent, Davis explained, ‘we campaigned vigorously to get an Asian worker involved, a health worker, who could counsel in their own mother tongue’ (quoted in Valier and Bivins 2002). For Davis, fluency of language and cultural understanding were some of the tacit cultural and linguistic dimensions of emotionally charged counselling interactions.

By the early 1990s, some NHS regional genetics centres were starting to follow the lead of sickle cell and haemoglobin clinics and attend to the significance of language, culture and ‘ethnicity’ in genetic counselling. The Yorkshire Regional Genetics Service in Leeds saw that with a large Pakistani population in the city there was an urgent need for professionals who could speak Urdu and Panjabi. In 1992, the Leeds team hired Mushtaq Ahmed who had settled in the UK from Pakistan and had worked in the Leeds Citizen’s Advice Bureau and in mental health services before embarking on his genetic counselling career (Ahmed 2021). Ahmed saw language as crucial (eg, Shaw and Ahmed 2004), and he was aware of the experience and knowledge he brought as a member of the local Pakistani community. Of particular concern was the potential reluctance of families to seek genetic counselling for fear of being blamed for practices of ‘consanguinity’ (that is, marriages between cousins). Such practices were increasingly criticised in UK media, and many in the Pakistani community felt that this important and valued cultural tradition prejudiced them in the eyes of white clinical genetic professionals (Ahmad 1995; Darr 1997).

Indeed, negative perceptions of consanguinity prompted the UK’s nationwide ‘Genetic Interest Group’ to commission a survey and report entitled ‘Access to Genetic Services by Minority Ethnic Populations’ (Darr 1999). Its author, social scientist Aamra Darr, confirmed that many people experienced difficulties in obtaining support and information from professionals who they felt did not respect their cultural background. Ahmed himself worked extensively to teach other professionals how such counselling encounters might best be approached (eg, Ahmed 2013).

In summary, attention to language, ethnicity and culture was one way in which, from the late 1980s and early 1990s, UK healthcare professionals took an interest in the tacit social and cultural conditions of genetic and haemoglobinopathy counselling encounters, which, some practitioners believed profoundly affected what kinds of information could be communicated, how that information was understood and what kind of support was possible. This chimed with intensifying attention on the psychological and social dimensions of such encounters, which I turn to now.

Making the genetic counsellor

As we have seen so far, the 1980s was formative for the UK’s development of practices delivered in regional genetics centres by genetic nurses, and within the haemoglobinopathy services by sickle cell counsellors and thalassaemia counsellors. During the early part of that decade, those ‘non-medical’ counselling roles were still relatively invisible—in the sense that they did not involve nationally organised training and they were rarely mentioned in journals or textbooks. There were also few opportunities for formal training, which tended to happen ‘in-house’ within individual institutions. One exception was a week-long training course for haemoglobinopathy counsellors run by Elizabeth Anionwu at the Brent Sickle Cell and Thalassaemia Clinic (Anionwu 2021b). Another was a week-long residential training course established in 1989 in Cardiff, developed by genetic nurse Mary Rogers in collaboration with colleagues within GNSWA, and accredited by the Welsh Nursing Board (Reynolds and Tansey 2010). Then in the early 1990s, Lauren Kerzin-Storrar, a US-trained genetic associate working in Manchester, took the first steps towards establishing the UK’s first masters-level training course in genetic counselling. She was supported in this endeavour by clinical geneticists Rodney Harris and Dian Donnai. In doing so, Kerzin-Storrar would introduce into the community a range of methods developed at Berkeley, California, including its emphasis on the psychosocial elements of counselling.

Born in the USA, Kerzin-Storrar had been studying in San Diego for a first degree in biology in the mid-1970s when she heard about the master’s course in Genetic Counselling at Berkeley, California. The first such graduate degree had been established at Sarah Lawrence College in New York in 1969; a handful of others followed suit and the Berkeley course was set up in 1973.35 That programme was part of a new initiative at Berkeley to promote community and integrative health, and a founding tenet of the programme was an emphasis on collective health and holistic healing. Thus, students on the course learnt not just about the science of genetics and the clinical care of inherited conditions, but were expected to gain insights into the social experience of disability or reproductive decision-making from placements in a range of settings, which included special schools and family planning clinics. The course was directed by Kessler, who promoted a vision of genetic counselling as social-psychological communication. He and the other organisers strongly emphasised a focus on psychological theories and strategies (Stern 2012). In this model, genetic counsellors were understood as part of a psychological interaction, which aimed to acknowledge the emotional impact for clients of the information being discussed, and to facilitate personally meaningful decision-making. Kessler emphasised techniques of audio recording and role-playing, which he believed (as Stern recounts) gave students a deeper understanding of the counsellor and counselled ‘as human beings working through what likely were painful and difficult feelings related to genetic disease and disability’ (Stern 2012, 140).36

The orientation of the Berkeley degree had a profound impact on Kerzin-Storrar’s own vision and practice, and on her establishment of the Manchester masters in genetic counselling in the early 1990s.37 Like the Berkeley course, Kerzin-Storrar arranged the Manchester masters in three parts, with taught modules (lectures, seminars, essays, on eg, clinical genetics, ethics, epidemiology and statistics), placements (the first in non-genetic healthcare, community and social service setting, the second in a clinical genetics unit) and a research project. Students were schooled in the practical techniques of understanding, interpreting and communicating with clients, using recording and videotape of role-play and real sessions with clients’ consent.38 One taught module, ‘Counselling and Care in Health Settings’, focused on the meanings and lived experience of disability and illness, and which Kerzin-Storrar modelled on a Berkeley first year module taught by social worker Judith Tiktinsky.39

Also teaching on the course was Elizabeth Anionwu, by now Lecturer in Community Genetics at the Institute of Child Health at UCL. Anionwu schooled students on haemoglobin-related conditions, but also on issues of ‘ethnicity’ and counselling interactions (discussed in the previous section). Recalling Anionwu’s insights into social identity and counselling, Kerzin-Storrar commented, ‘frankly in those early days that would have been the only…thing in the entire course that actually addressed [issues of culture and identity] directly’ (Kerzin-Storrar 2022). Anionwu’s contribution to the course was one instance of communication across the disciplinary divide between ‘haemoglobin’ and ‘genetics’ services—then still a rarity noted by the aforementioned Genetic Interest Group report.40

Like in Berkeley, the Manchester degree put students on placements in social care, educational or health settings, which they would do with supervision, to introduce them to the experience of reflective practice (Kerzin-Storrar 2022). Organisers saw these placements as, in part, a way of bridging the expertise of those coming from nursing training (who already had extensive experience of such settings) and those with science degrees. In creating the course, and by extension the new identity of the ‘genetic counsellor’, the Manchester group consciously attempted to bring into alignment students with expertise in nursing and social work and those with science degrees.

This alignment work happened in concert with another institutional change. In 1995, the GNSWA voted to change its name to the Association of Genetic Nurses and Counsellors (the AGNC); a letter circulated to services around the country explained, ‘it was felt that this [name] best describes the focus of most of the membership’.41 The AGNC also started creating a registration process for genetic counsellors, with the aim of providing a benchmark for skills and expertise. The organisation’s new name was controversial—‘social workers’ were no longer in the title, and it affirmed the visibility of the identity of the ‘genetic counsellor’. Some remember unhappiness among the membership; one (former nurse) recalled, ‘I think [that some nurses] very much felt that they were being left behind … In a way it was changing the future of their whole profession’ (Barnes 2021). So, for example, in creating the registration process, the AGNC leadership (many of whom were genetic nurses themselves) incorporated into the system a ‘grandparenting clause’, which stipulated that genetic nurses could apply for registration on the basis of their nursing qualifications and a portfolio drawn from their practical experience. Organisers felt that this acknowledged that a lot of the experienced nurses should not be expected to devote the time and expense to completing a master’s degree.

As well as the delicate knitting together of different specialities, Kerzin-Storrar recalls the work involved in creating a space for MSc-qualified counsellors within the national professional landscape (Kerzin-Storrar 2021; 2022). Some clinical geneticists in Britain remained sceptical about the value of the new degree. Many still believed that genetic counselling should be done only by clinical geneticists, and at the same time as discussions about diagnosis and family history. Although personally supportive of Kerzin-Storrar, Peter Harper was one such sceptic. 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. Today Kerzin-Storrar perceives that resistance to have been partly structural—ultimately, genetic counsellors were limited in their autonomy because the NHS services worked in teams, and the consultants in those teams took responsibility for cases (Kerzin-Storrar 2022). Kerzin-Storrar and her colleagues worked to persuade centres that masters-trained genetic counsellors were qualified and desirable. Every year course organisers brought in a couple of students who were seconded from one of the regional genetics centres, as a strategy for embedding the service in the course and communicating the qualities of the course to their colleagues. Eventually they crossed a threshold and there was a critical mass of qualified counsellors working in centres around the country.

By 1995, genetic counsellors were an accepted part of the NHS clinical genetics community. The role of the ‘genetic counsellor’ had not replaced that of the genetic nurse, but represented a more formal articulation of a role first developed by nurses and now practised by people with different training backgrounds. In 1995, the newly named AGNC was brought under the umbrella of the new ‘British Society for Human Genetics’—an organisation that also included the Clinical Genetics Society, the Association for Clinical Cytogenetics and the Clinical Molecular Genetics Society. This served to underline the successful integration of genetic counsellors with nurses, and signal their mutually visible role within the broader field. And significant for many of those in the AGNC, it brought the genetic counsellors into the new society on an equal footing with clinical geneticists.