INTRODUCTION

Living in a family where there is an inherited genetic condition, such as a cancer, motor neurone disease, vascular-type Ehlers–Danlos syndrome or Huntington's disease, to name a few, is a non-negotiable medical story. However, it is not the totality of the story (Machirori et al., 2021). Genetic science and medical discourses centre their knowledge on the development of genomics, increasing the number of people for whom predictive or susceptibility testing becomes an option (Horton & Lucassen, 2019). Most of the support for families is given by genetic multidisciplinary teams that include medically trained specialist clinical geneticists. In this paper, I will be focussing on the UK context.

This article outlines some ways in which I have utilised systemic family therapy and narrative concepts and principles to enhance the counselling aspect of genetic counselling within a particular setting. These contributions, in turn, have influenced my practice and position. I hope to encourage curiosity and promote collaboration on multidisciplinary projects in this important and emerging area of work. The background examples are a combination of real cases presented in a way that protects confidentiality.¹

GENETICS IN CONTEXT

Even though more and more individuals and families, as part of their medical routine, undergo genetic testing within the medical context, there is still a lack of knowledge in this field (Douzgou & Newman, 2021).

What is genetics? What is genomics? What is a rare genetic condition?

Genetics and genomics both play roles in health and disease. Genetics refers to the study of genes and the way that certain traits or conditions are passed down from one generation to another. Genomics describes the study of all of a person's genes (the genome). A rare condition is one that affects less than 1 in 2,000 people. There are over 6,000 different types of rare conditions and around 80% have a genetic origin (The National Human Genome Research Institute, 2023).

Advances in genomic technology are having a profound impact on both healthcare professionals and family members, providing new knowledge and creating new dilemmas (Machirori et al., 2021; Meyerstein, 2001; Patch & Middleton, 2019). An increase in genetic information does not resolve the ethical, cultural, religious and human questions that arise alongside it. The benefits of genetic healthcare also depend on how information is communicated to the individual and by proxy to the family (Mendes et al., 2016), as living with a rare genetic condition or an inherited genetic condition is a family matter (Mendes et al., 2010). A particular group of healthcare professionals, genetic counsellors (GC), with expertise in genomic medicine and counselling skills, are well positioned to take care of the family and provide support to other health professionals (Middleton et al., 2023).

GENETIC COUNSELLORS

Genetic counsellors have a professional background in fields such as nursing, social work, psychology, chemistry or biology. The United Kingdom has played a pivotal role in the advancement of the profession, initiating the inaugural master's degree program for genetic counsellors in 1992 (Middleton et al., 2023; Paneque et al., 2023).

Ciucă et al. (2022; p. 3) explain that genetic counselling is the process of helping people understand and adapt to the medical, psychological and family implications of genetic contributions to disease. A GC plays a crucial role in promoting informed decision-making and facilitating adaptation to genetic risks or conditions (Biesecker, 2020; Resta et al., 2006), as well as in supporting ‘family communication’ within families, a process well established in genetics (Mendes et al., 2016).

Each genetic condition and family require a different kind of conversation, which makes the role of genetic counsellors challenging, but important and necessary. Systemic family therapy approaches and methods, and the principles of narrative therapy, can offer valuable support to genetic counsellors (GCs).

SYSTEMIC FAMILY THERAPY AND NARRATIVE THERAPY IN GENETICS

Systemic family therapists (SFT) work with individuals and families across contexts, generations and the family lifecycle (Carr & Cartwright, 2001). We focus on relationships and our methods are informed by communication theories. Trained in grief and family loss, we collaborate with families to address dilemmas and empower individuals. Narrative therapy emphasises the multiple stories people tell about themselves, assumes that these stories shape self-identities and provide meaning to their experiences (White, 2007; White & Epston, 1990). These perspectives can be challenging in medical contexts, as the medical discourse internalises problems and focusses on the individual from a position of expertise.

The belief that genetics now has all the answers to our medical questions also risks focussing the narrative on one unique account that is aligned with a traditional medical model. Examining genetics from a position of power and expertise may inadvertently exclude important voices, particularly those with less influence (Machirori et al., 2021), such as the patient and the family members, while unintentionally privileging the narratives of experts.

I suggest that genetic distress within a family is interlinked with multiple social, cultural and political factors. For example, advances in genetic research may prevent a baby from being born deaf or blind by correcting genetic mutations and therefore be referred to as medically ‘excellent news’. However, it is possible that this does not reflect the perspectives of the deaf and blind communities. This raises questions about what defines a healthy human and whose story is being told and privileged. Experts often simplify suffering or sedate it (Davies, 2021, p. 287), leading to labelling and othering. However, as Newman (2023, p. 5) suggests, we can adopt a more humanising approach to support ‘livable lives’. Fortunately, care and research are increasingly embracing a comprehensive, patient-centred approach that values multi-faceted support (Strnadová et al., 2023).

Narrative therapy explores ideas of power and justice (Reynolds, 2011) in conversations, and suggests that space for questioning can be considered an intervention that helps families to find their stories of resources and agency. Furthermore, systemic approaches acknowledge the impact of differential power on the relationships we establish with the individuals and families that consult us (Bownas & Fredman, 2017). When working in medical contexts, a systemic perspective can focus on relationships and the wider social and cultural contexts that shape family interactions, such as, gender, race, religion, age, ability, accent, class, culture, ethnicity, education, social status and sexuality (Burnham, 2012).

Therefore, practitioners of systemic family therapy (SFT) and narrative therapy can make significant contributions to genetic counselling in two fundamental ways: firstly, by providing support to counsellors through collaborative approaches such as supervision, training and involvement in community projects; and secondly, by providing ongoing direct support to families.

CONTRIBUTIONS TO GENETICS FROM FAMILY THERAPY AND NARRATIVE PRACTICES

To begin with the latter, here is an example of how an SFT service can provide ongoing support to a family:

Timothy, a 40-year-old man of dual heritage from a working-class background, was referred for family therapy by the genetic counselling team. They reported that he had been diagnosed with cardiomyopathy, a genetic heart condition. His father passed away due to the same genetic condition, and his younger brother, who had recently arrived as an asylum seeker, is also afflicted with the same condition.

Implications for the family

Timothy was concerned about his own health and its potential impact on and implications for his children, as well as the financial and emotional burden of the diagnosis. His wife, Annie, a white woman, from a middle-class background, felt he was unnecessarily worrying about money. She complained about his emotional withdrawal, while Timothy was struggling to express his fears.

The genetic counselling team reported that Timothy was unsure about genetic testing for their children because of stigmas related to the condition. Annie, his wife, on the contrary, wanted to ‘explore all the options’.

The family therapist worked with the couple to navigate emotional distance and then accompany the family through decision-making regarding genetic testing, considering financial concerns, stigma and cultural factors. Later in the work, Timothy asked to include his brother.

Systemic family therapists have been working alongside genetic services in different ways (Dane et al., 2024) delivering multi-family interventions (Eisler et al., 2016; Mendes et al., 2010, 2015) and facilitating groups with women who tested positive for breast cancer gene mutation (McDaniel & Speice, 2001). Families living with Huntington's disease (HD)² had engaged in various narrative group sessions that adapt the collective narrative practice of the tree of life (Ncube, 2006) to a sole collective tree (Denborough, 2008; MacLeod et al., 2018, 2021; Spiers et al., 2020).

To illustrate how systemic family therapy (SFT) and narrative ideas can specifically support genetic counsellors, I will present two examples from my practice: a comprehensive case of genetic counselling supervision and a succinct overview of team collaboration and podcasting.

NARRATIVE COUNSELLING SUPERVISION, AN EXAMPLE FROM PRACTICE

The process of supervision is central to the ongoing development of the GC's professional identity; it offers a space that encourages exploration of the diverse aspects of the profession (Middleton et al., 2007; Paneque et al., 2023).

I began supervising a group of genetic counsellors at a large UK inner-city hospital in 2014, using a narrative perspective. This process draws on concepts from community assignments (White, 2003), feminist principles (Russell & Carey, 2003) and collective narrative practices (Denborough, 2008). Initially, supervision was conducted in person at the hospital, but it has since moved online due to coronavirus disease 2019 (Covid-19).

Each monthly session lasts 2 hours. The first hour focusses on building connection and setting expectations. We begin by exploring a theme of concern as a group. This process helps to promote solidarity (Reynolds, 2014) and highlights insider knowledge on addressing challenges.

In the second half, one genetic counsellor is interviewed while three others act as outsider witnesses (OWGC) to the conversation (Carey & Russell, 2003; Fox et al., 2002; Nasim, 2007; White, 2007).

For 20 minutes, a genetic counsellor (whom I will refer to as Miriam) shared a concern with me. I started by asking, ‘What are your hopes for supervision today?’ This question provides clarity and direction, helping me focus on her hopes rather than my own agenda, while also prompting her to consider her desired aims for the session.

Miriam thought and answered, ‘I hope to see what other people would have done in my place. I hope to experience a feeling of camaraderie. Reassurance in the sense of what I did well’. I gave the words back to Miriam, reiterating, ‘this is what you hoped to get from supervision’. She can adjust or add more wishes. I then asked her, ‘What do I need to know to be able to understand your hopes?’ I acknowledged that I may not need to know everything.

Miriam said, ‘it is about a bad news result for a woman. When I saw her after my honeymoon long break, I felt inadequate, overwhelmed and unable to respond to the psychosocial aspect of the consultation. It was a video consultation.

She is in her 30s and her mother had breast cancer. I knew that she had a lot going on. She was feeling anxious. She cannot go to the hospital because of problems with transportation’.

Keeping in mind the hopes that Miriam had for supervision, reassurance and camaraderie, I asked her, ‘How did you know all that?’ I wanted to invite Miriam to notice and share with us the diverse ways in which she addressed the psychosocial aspects of the consultation, and to take a position on her own practice.

Miriam's answer was, ‘I took time to understand, and I asked her many questions. She wanted to attend the face-to-face appointment- but she did not have transport. The plan was to go to the GP. I knew from the GP that she missed appointments. I could have assumed that she was lazy, or not interested in the genetic test. So, I asked her, and she said that because of her depression she was missing things. I did manage to coordinate a video call with her. She had many things happening at once. It was not ideal for me, but I gave her a longer appointment’.

Miriam and I had an extended conversation, during which I asked, ‘Miriam, how is this conversation going?’ She replied, ‘Good’, so I followed up with, ‘What makes it good?’

Miriam again, ‘I notice that I did more than I thought I did. I sometimes look for reassurance outside, but I see I did a lot this time’.

Miriam shared that the patient felt less worried about the medical aspects after their consultation and appreciated having a plan and someone on her side.

When I am listening, I am interested in the double story, which encompasses the struggle, the ideas that support the struggle and the resources utilised by Miriam or her patient to address it. According to White (2004), the process of listening and responding in narrative therapy is referred to as double listening, wherein both the problematic account and the responses to it are listened to.

I then have a brief conversation with three outside witnesses genetic counsellors (OWGC), each lasting around 5 minutes and based on the outsider witness questions (White, 2007, pp. 190–192). I then finish returning to the person presenting the dilemma. This structure of supervision aims to enhance shared initiatives and make visible the responses to dilemmas of the GC with their multiple ways of reflecting on it (White, 2007). I encourage the OWGC to both listen and to take notes in a particular way. Noticing the responses to the problem or the issues that the GC at the centre gives value to.

I spoke with the first OW, whom I will refer to as Rob. ‘Rob, is there a word or an expression that caught your attention?’

The answer is often lengthy, so I encourage the genetic counsellor to choose one word or expression. Rob said, ‘I will stick with “I asked her” Miriam repeated this multiple times during the conversation with you’.

I invite Rob to share what “I asked her” reveals about Miriam, using an image of the world. This image helps clarify what he heard and highlights what seems important to Miriam.

Rob: ‘I saw Miriam as a “lunchtime school assistant” surrounded by children eager to play a game. Most of them can participate, but one child struggles. Noticing this, the assistant asks if she can help. The child needs a bigger ball, so she goes to get one, despite the challenge of leaving the others for a moment. She believes it is what she needs to do. After that, the child feels happy and enjoys playing with everyone’.

I then asked Rob how this is all resonating with him. Rob felt similarly while working with two sisters affected by Huntington's disease (HD) – one positive and one negative for the gene extension. During a heated discussion unrelated to HD, he worried he was not doing his job by letting the heated discussion carry on in the clinic. However, his calm attitude helped resolve the issue.

I asked Rob where all this has transported him: ‘Thinking about the image of the school assistant and the two sisters, how has listening to Miriam affected you?’

Rob said that he was reminded about the importance of not trying to fix the person or situation and the power of making space for them.

We finished there and after hearing two more GCOW, I went back to Miriam.

I said to her, ‘Miriam, your hopes for supervision were to see what others would do in your place and to gain a sense of camaraderie and reassurance. Where has our conversation taken you?’

Miriam told us she felt much more confident about what she had done and was surprised by the things she could recall. She also mentioned that she would remember the image. She said, ‘That is a great illustration of the importance of our work. Being in the middle can sometimes make us feel like we are just going through the motions, especially with so many patients. This is where we really shine as genetic counsellors!’

I thanked Miriam, and she said that it was a good way to end our conversation.

At the end of the session, everyone comes together to discuss.

REFLECTIONS FROM SUPERVISION

The narrative framework is both welcomed by GCs and a valuable resource for my own learning. I am transparent about working from a narrative perspective in this context, but I am not entering ‘these assignments with an agenda to change or transform anything, with pre-established goals based on taken-for-granted ideals’ (White, 2003 p. 28) for the GCs supervision group. Together, we learn collaboratively, exploring ideas that do not always fit the medical context. This requires genuine listening and risk-taking from both sides, along with constant questioning and research. Focussing on less visible narratives validates the counselling aspect of genetic counselling. Recognising that individuals and families are shaped by social and cultural influences, including biomedical culture, allows for multiple stories to emerge. These aspects of SFT and NT in supervision support genetic counsellors in their clinics. However, it is evident to me that some families would benefit from further discussions about the mental and relational impacts of their genetic conditions beyond the medical context. There is potential for mutual collaboration.

There are other ways to integrate these methodologies into genetics and genomics, such as collaborating with different support teams.

COLLABORATION AND CREATIVITY: RARE-D

Creativity is at the heart of what we do in the therapy room, both as SFTs and narrative practitioners. Images, metaphorss and playfulness (Freeman et al., 1997; Vermeire & Van den Berge, 2021) are central to this work. It is often the only way to create safe spaces where difficult issues can be understood and explored.

Rare-D is the first commissioned project of the Whitworth group, and I am part of it. This initiative is driven by creativity and innovation. The Whitworth group has expertise in art, media, communications, psychology, genetic counselling, patient and public involvement, narrative practices, rare genetic conditions and research methods. It focusses on genetics and aims to foster a dialogue between art and science.

In the form of podcasts, we bring together the art of conversation with the discussion of scientific and human genetics knowledge. These conversations have the potential to serve as a space for reflection, which can ultimately benefit families. Each podcast is a unique and stand-alone conversation that aims to make accessible to everyone something about the lived experience of people with rare conditions, together with the latest research. The goal is to inspire healthcare professionals, including genetic counsellors and therapists (particularly family therapists), and the public, to initiate new conversations about what it means to live with a rare condition.

As we learn more about what rare means to the podcast's guests, we discover that collectively, we are actually less rare than we thought. More details about the podcast and other projects can be found on the Rare-D³ website.

IDEAS AND PRINCIPLES FROM NARRATIVE THERAPY THAT SUSTAINED THE CONVERSATIONS

As a co-facilitator and member of the group, I can bring my working principles into the podcast conversations. My specific ethical stance is influenced by systemic knowledge, the narrative approach and collective narrative practices (Denborough, 2008; Freedman & Combs, 1996; White, 2007). In accordance with the UK Association of Family Therapy recommended standards (AFT, 2020) I also understand that individual troubles, difficulties and self-doubts do not develop in isolation but within contexts and of relationships. I draw from the assumption that people's lives are multi-storied and that stories have a real effect on people's lives (White & Epston, 1990).

In this way, the podcast series are contributing to resisting the idea of a single story written by only professionals and supported by structuralist discourses of abilities, gender, ‘race’⁴ and knowledge. The podcasts sought to avoid reproducing dominant discourses around illness, conditions and medical positions. One of the aims is to spark a chain of possibilities around people's power to construct new meanings through the stories they listen to, tell, enact, remember and share.

Creating space to reflect on the medical context's impact on individuals and families with rare genetic conditions can help shift and open up conversations. Those living with a rare condition often feel seen and defined solely by their diagnosis, leaving little room to explore their identity according to their values and hopes. By expanding the concept of being ‘rare’, we can highlight how it affects both those living with these conditions and those who work with them. Each podcast conversation aims to portray lives characterised by multiple stories.

PODCAST AS AN ARCHIVE OF RESISTANCES

I hope that these podcasts will become a particular document, an archive of resistances, that can circulate and be listened to repeatedly; documents of a variety of RARE communities, including communities of concern. Traditionally, a written document was associated with privilege, and for a long, long time, with male privilege. In this way, a podcast can be called a verbal creative document and can communicate both life experience and knowledge, local and expert.

As we facilitate conversions, I both pay attention to the difficult descriptions of illness and conditions as well as look for and invite the telling of stories of resistance. We listen and we honour them. It is too often that despair and hopelessness take centre stage in conversations. Michael White (2004, p. 59) describes this as being ‘trapped in a single dimension of living’ frequently not recognising other dimensions such as what is important to the person and what they can give value to. In conversation with our guests in the podcasts, we are inviting people to tell their account by enabling double-storied experience influenced by the concept of enabling double-storied memory (Denborough, 2008, p. 41–43).

An example of this can be found in episode four, HOW COULD RARE GENE DISCOVERIES/DIAGNOSES IMPACT ON YOUR LIFE?⁵

Podcasts, due to their editing process, often omit the questions that lead the conversations. In this episode, we examine the portrayal of children with genetic conditions and illnesses in medical texts, where images tend to emphasise the illness rather than the individual. These depictions often reduce the person to a mere representation of the condition. We invite our guests to critically engage with this historical and outdated societal model. By doing so, we acknowledge the legacy of these representations and create space for alternative perspectives. Specifically, we address the dehumanising imagery of bodies, often depicted with obscured eyes, which reduces the individual to a medical condition, stripping away the presence of lived experiences, emotions and personal stories.

At minute 23:14, one of the facilitators shares her daughter's experience, offering a counter-narrative to the dominant view that often overlooks the importance of celebrating differences and uniqueness. She consented to have her precious blond, blue-eyed daughter featured in a book about achondroplasia, provided she was depicted with her eyes open and smiling.

REFLECTIONS FROM THE PODCASTS

I believe that by circulating the preferred stories of these communities through podcast conversations, new knowledge can be made available to a wider audience. There is an understanding in narrative practices that ‘audiences play a significant part in the authentication of the preferred claims’ (Epston & White, 1992; p. 22) in people's stories.

The podcasts may represent a broader audience for individuals and families living with rare conditions. Life and identity are shaped by relationships and the acknowledgment of shared stories that resonate with an audience (White, 2004). As Combs and Freedman (2016) note, we shape our identities as both performers and audiences, becoming who we enact. Being both actors and audience allows us to ‘make each other’ moment by moment (Myerhoff, 1986). Conceivably, for families isolated by a narrow understanding of a rare genetic condition, listening to diverse stories can foster hope, and the same holds plausible for health professionals.

FINAL THOUGHTS

This paper describes my journey as a family therapist and narrative practitioner in the context of genetics and genetic counselling. My experience has been highlighted through the privilege of supervising genetic counsellors and exploring creative possibilities with podcasts. Examples and vignettes have been shared that demonstrate how systemic family therapy and narrative therapy can be valuable in providing assistance to families and services, both in the hospital and in the community.

These methodologies have the potential to be effective and powerful in their own right, and they are worth pursuing. The future will require the formation of collaborative partnerships among practitioners with diverse approaches and expertise. Emphasis is placed on recognising the full meaning of the term ‘expert’, which encompasses those who possess a profound understanding of a subject – such as medical professionals, academics and teachers – as well as those with lived experience of the conditions explored.

There is ample opportunity for us to share our diverse expertise and collaborate. Perhaps we are moving away from the idea of a single specialisation towards a collaborative model. In this article, I wish to echo a notion articulated by Vikki Reynolds (2011), reiterating that by incorporating marginalised voices into discourse, we can create space for all. To express this with confidence, we should ask more questions, compare more and research these collaborative ways of working in teams. Further research is required to determine the effectiveness of incorporating SFT and narrative ideas into genetic counselling supervision and podcast communication.

As society continues to evolve, it feels essential to foster a community of creative and like-minded individuals who can contribute in meaningful ways.