by Jehannine Austin
My professional life up till this point has been centered around a mission to bring genetic counseling to people who – like me – live with psychiatric conditions, and their families. This has been my mission for >20 years, since my family started asking me about whether psychiatric conditions were genetic and what this meant for us while I was doing my PhD on this topic. Realizing that it wasn’t just my family that had these questions and that no-one was really addressing them is what drove me to train as a genetic counselor. Once I completed my genetic counseling training in 2003, no one would hire me to provide genetic counseling for families with psychiatric conditions. Of course, psychiatric conditions have always been profoundly disenfranchised in terms of health services, but as well, there was no evidence that people with psychiatric conditions wanted genetic counseling, and no evidence that it could help. So, this drove me into research.
I landed a research professorship and my team and I generated data showing that:
- people with psychiatric conditions wanted access to genetic counseling
- genetic counseling helps people with psychiatric conditions
In 2012, on the strength of these data, we established the Adapt clinic – the world’s first specialist psychiatric genetic counseling clinic. It was all about helping people understand the factors that contribute to developing a psychiatric condition, and how to use this understanding to engage in self-management strategies to protect their mental health for the future. It was about helping people to make meaning, and understand that psychiatric illness is not your fault, and not your fate.
In 2023, after 11 years of helping patients, training students, generating research data about the impact of what we do, and providing a model for psychiatric genetic counseling services around the world, our service is being closed.
I’ve fought this with everything I have because it feels so wrong. But I’m so bone tired …and there’s literally nothing more I can do. It’s over.
No amount of data demonstrating the awesome outcomes that patients experience (increases in empowerment, changes in behavior to engage in self-management strategies to protect their mental health) after receiving our services has swayed the decision. So, this is a eulogy.
The webpage for the clinic has silently ceased to exist.
The reason given for the death of the Adapt clinic? To redeploy the counselors to provide service for general genetics patients because the waitlist there is so long. It’s apparently that simple. And pointing out that this is classic disenfranchisement of people with psychiatric conditions – again, people like me – has made no impact. I may as well be speaking to a wall.
Now, as someone who has served as a leader myself in a publicly funded healthcare setting, I do of course understand that we are forced to make decisions about how to allocate scant resources. And sometimes people might not like the choices we make. I understand that. My objection is that the Adapt clinic embodies (has embodied) all of the principles and values claimed to be held dear by the healthcare system that is closing it. That is what I find distressing.
Initially, when I saw the writing on the wall that the clinic would be closed, I was devastated- this was my life’s work, I thought. And it’s been for nothing, my internal voice said…I am a failure. I lost all energy to continue in my efforts to leave things better in the world than I had found them. Because, what is the point? I – and the counselors within it – gave the Adapt clinic everything we had, it was demonstrably successful, and yet it is still being closed….it felt like it was all for nothing.
But this narrative is wrong. I can see that I am not a failure, and that the clinic was not a failure. Instead, the clinic, and the counselors within it, and the patients we serve, have all been failed by the system we are in.
Our efforts were not for nothing. The Adapt clinic has helped about 1400 patients and trained over 50 students, some focused on clinical skills, some focused on research skills, and some both. We published about 20 papers that are out there in the world that explain the difference that psychiatric genetic counseling can make for people, and how to do it well. I know that we have inspired practicing genetic counselors around the world as well as students…we have inspired people to train in this discipline. I know this because people have been gracious enough to tell me about how our work has affected them.
Given all this, you have to ask, why is the clinic dead? I think there are two real answers to that. First, psychiatric conditions are still so stigmatized. People with mental illness – like me – have a long and awful history of being disenfranchised, and here we see it again: an evidence-based service for people with psychiatric conditions cut, despite data showing that it’s needed and it helps. And yet it’s cut so that we can prioritize providing services for people with non-psychiatric indications.
Second, the genetic counseling services we provide for people with psychiatric conditions typically don’t involve genetic testing. And though the service helps people, the health system decision-makers don’t value genetic counseling when there’s no genetic testing being done. The psychotherapeutic work we do is not valued …which is truly the hardest thing for me to swallow, because data show that it’s exactly this that makes the difference even when genetic testing *is* available. It’s the counseling that helps people.
So, yes, this is a eulogy — a public expression of pain and grief and disillusionment about the death of a clinic whose establishment was the culmination of >10 years of my work, that we nurtured successfully for 11 years, and that brought purpose to my life and a way to channel my own experience of psychiatric illness to help others. It’s so hard to build and create something new and innovative, and so very easy to destroy it. It does feel like a death.
My biggest fear is that others will stop trying to establish psychiatric genetic counseling clinics in other jurisdictions as a result of this. People – like me- who have psychiatric conditions deserve better than this. So please keep pushing. Others have taken up the mantle – there’s a clinic in Cardiff, and Tennessee, and others (if you know of others, please tell me!)… I’m rooting for all of you. Please let me know how I can help.
But I think this reflects broader issues too – I think as a profession, we have to answer some questions for ourselves. Are we happy with being reduced to roles as the purveyors of genetic testing? And only post-test counseling at that? This is the direction in which we are headed. Medical genetics departments with long and growing waitlists often respond by simply reducing the list of indications to make fewer people eligible to access genetics services. That’s exactly what happened to the Adapt clinic — the eligibility criteria for access to genetics services shrank to exclude our patients. What happens to these patients? It’s not that they get service elsewhere – they don’t. The people who make these decisions are deciding who gets care — deciding who matters. This is an issue that relates to equity and justice.
In writing this eulogy for the clinic that I created and loved, my purpose is to try to use its death for something positive. Given our increasing focus on the importance of EDI issues, I would like to suggest that this is an opportunity to question whether tertiary-care clinical genetics is the right location for genetic counselors if we are to be able to provide just and equitable access to our services for people who need them. Situating genetic counseling services in alternative locations, such as primary care/family practice, might be worth considering as a way to ensure our ability to practice to the top of our scope, to offer more than just genetic testing (like psychiatric genetic counseling), and to ensure more equitable access for patients.
I hope that the end of Adapt can be used as an impetus for the start of something new. If the Adapt clinic has impacted you in some way, those of us who nurtured it would love to hear about it in the replies, or by message.
Some of my fave quotes from people who had psychiatric genetic counseling in the Adapt clinic (from Semaka et al 2019):
“Until genetic counseling, no one ever coherently explained to me why I have a mental illness. And I think that’s a conversation that needs to be had because most people just think they’re having a bad time of it or they just think that they just need to try harder”
“I felt in control, you know [psychiatric genetic counseling] made me feel more empowered than I did when I walked in and I think for me that’s a big deal… I just felt after the appointment I had more tools to control my life.”
“[Psychiatric genetic counseling] gets rid of some of the shame…. with mental illness, it’s so hard to know what you did wrong but really you didn’t do anything wrong and [psychiatric genetic counseling] just explains that to you… so you’re able to look at this and think, ‘OK, this isn’t my fault’”.
The DNA Exchange 
Jehannine, I am heartbroken to hear this – for you and the heart and soul you poured into it, and for the patients who will no longer have access to the incredible services Adapt offered. I’m glad you concluded that you are not a failure, as you are the antithesis of failure. Your persistence and dedication have given all of us, and the world, inspiration, strength, and courage to face what’s difficult, personally and professionally. I know I have personally benefitted from your expertise and willingness to help when my family faced psychiatric illness, and I have loved being able to send a few of our students to Adapt for training. I don’t need to tell you that despite the closing of your well-nurtured and well-loved clinic, the world is a better place for having had it. I hope that you will be active in the effort to restructure the system such that GC services are valued for the counseling part, not just the genetics part. I can’t think of anyone better suited to the job.
So sorry to hear this and my heart goes out to the Adapt staff, and the patients who will not now receive such an exemplary and beneficial service. The All Wales Psychiatric Genomics Service we developed in Cardiff was inspired by the work you and the team in the Adapt clinic have done and the achievements you’ve made. It is myopic and discriminatory to cut such services for those with mental illness. But Adapt lives on through the long list of people you have motivated and service developments you have informed (and continue to do so). Thank you and don’t let the bastards get you down.
Jehannine, I am also so sorry to hear of the closure of Adapt. I personally haven’t benefited from the clinic services, but i am a strong supporter and colleague of you and your team’s work. Perhaps there is opportunity elsewhere to re-invent and re-imagine, so ultimately the GC services can still be sought.
Jehannine- I rotated through the Adapt clinic as a GC student in the summer of 2014. You and your team’s work made a profound impact on my practice and my scope. I am able to pass on what I learn to the students I supervise, my colleagues, and in providing psychiatric genetic counseling lectures to GC trainees each year. Working under you and Emily provided my first positive example of a trusting and supportive mentee-mentor relationship, which I still draw on. While I have not yet been successful in carving out a psychiatric GCing role, I get to practice as one everyday in the ART/preconception world. Individuals facing infertility and recurrent loss are burdened by psychiatric disorders at an incredibly high rate and I have the tools to address the etiology of psychiatric disorders, treatment options, inheritance, genetic testing options, and protective factors. I have these tools because of you. I am often sharing my favorite paper of yours, conceptualizing genetic counseling as psychotherapy, now nearly a decade old, and helping my students push the boundary of how GCs can help patients with mental illness.
I know this doesn’t take away from the closing of Adapt, or what the death of the clinic says about societal perceptions of people with psychiatric illnesses or the box genetic counselors are being placed in, but I want you to know that you, Emily, and Adapt have made a huge impact on me.
Jehannine,
This is heartbreaking on so many levels. Words can’t express fully how I feel about this, just like other kinds of grief, and I love your perspective and how you’ve transparently expressed your processing. You always have been an inspiration and leader for our profession and for so many GCs and patients alike. Regardless of its current status, Adapt will always be an example of how innovation and research can lead to improved patient care.
I’ve always had a special interest in psychiatric genetic counseling (hence my attendance at the short course on it in 2003 when I attended my first NSGC conference as an incoming GC student). You and Adapt have helped me figure out how to incorporate it into my genetic counseling for any referral indication (especially when it comes up in family history) and given me the tools to teach and encourage other students to do the same (especially during clinical supervision). I taught students formally on the topic for several years, with your guidance, until Katie enthusiastically took over. It’s been incredible to see how the specialty has evolved, primarily with your dedication, in the last 20 years. Nobody, and no action, can take that history away. Thank you for all you have done, and I can’t wait to see where you take your passions, skills, and ingenuity next!
I am very sorry to hear about the closure of the Adapt clinic. I have so appreciated your research and clinical focus on psychiatric genetic counseling and particularly am grateful for all the students (through the CSU program and other programs!) you and your team mentored. We loved having you and your group come down to San Francisco for workshops. I myself use the “marble model” often, both professionally and in my personal life. Your concerns about the bigger genetic counseling issues raised worry me as well and I am glad you shared your thoughts about this with us all. I can only imagine how difficult this time is for you and hope you know how many people’s lives you touched with this work. Wishing you the best going forward.
I also feel a deep sense of sadness around this. That being said, through your trainings with NSGC, I have incorporated psychiatric genetic counseling into my daily genetic counseling practice. Although my specialty is reproductive medicine, I have found that psychiatric illness is one of the main concerns of individuals pursuing fertility treatments, which I know has been reiterated in your research. Although the clinic is officially closed, I have benefitted from its existence and will attest that my patients have benefitted as well. For this, I am very grateful.
Jehannine – I’m so sorry to hear of your experience. You have always inspired me. When I worked in Australia you took the time to speak to me by phone and helped guide me through a complex case. Know that the mother I subsequently saw, who had carried the guilt of believing she was the cause of her son’s psychiatric illness for 35 years, felt heard for the first time and released that guilt due to your guidance. Your impact has been immense – and I strongly suspect it will continue in some new way.
Jehannine,
In Australia in ~ 2017, I remember my workplace buzzing with excitement after hearing you talk at the HGSA conference about decoupling the value of genetic counseling from genetic testing. This message has stuck with me, and I’m sure has shaped a generation of genetic counselors worldwide to advocate for the value of the counseling part of genetic counseling.
When I worked in a neurogenetics clinic, we occasionally got referrals for psychiatric conditions, and in other specialties I’ve encountered patients referred for a different reason who have questions about their family history of psychiatric conditions. I used your wonderful jar models and papers to guide me. I am sure I’m not the only one who is grateful for the wisdom gained from the Adapt clinic.
Recently, a student approached me for career advice as they are interested in a specific area (not psychiatric) for which there is not much in the way of dedicated clinics. I referred them to your work, as a way to inspire future GCs to see how they could generate evidence of a need and advocate for resources to develop a new clinical area.
The Adapt clinic has definitely made a positive impact on the field of genetic counseling.
It’s like the writer who was modestly successful in her time but became one of the most beloved writers after her death (Jane Austin, ironically), or the painter who was modestly successful or sometimes just plain unknown whose work sold for astronomical sums after their death (Vincent Van Gogh), or the geneticist (Gregor Mendel)…. Ahead of their time, so not seen as successful yet changed the course of literature, or visual arts, or statecraft, or healthcare. It’s hard to know all the waves of influence that we set off with any enterprise.
Wonderful post, appreciate the thoughts on the overarching problems with how genetic counseling is viewed by some and the problems this may cause in the not so distant future. Our role with patients is not well understood and without increasing understanding we are doomed as providers. I’m sorry to hear your hard work with Adapt has come to an end but do think that there is much to be learned from your experience. Thanks again for this wonderful post and your hard work in this area!
What a tremendous loss for patients and the genetic counseling field. Like other commenters, I use your approaches all the time in general genetics clinic. The work continues in small ways in so many places.
Jehannine, I am so very sorry for your loss. It’s indeed heartbreaking, and I hope you know the profound impact you and the Adapt clinic have had on patients, families and the entire genetic counseling community. The clinic’s legacy will live on. When you feel ready, I share your concerns about how genetic counseling has been too closely linked to testing, and the counseling aspect is being lost. I would love to work with you and others on a plan to reinvigorate the profession with therapeutic counseling skills.
You are correct that GC services are being molded to fit the economic model of health care rather than to meet patients’ needs. I feel sad about it, too. Thank you for your amazing work. You have helped many people, and your accomplishments will continue somehow.
Jehannine – I am so saddened by this news. You are anything but a failure (although I can relate to that feeling all too well). Your work has truly been an inspiration and I am confident that you are not yet done playing in this space. Consider this a pause for the world to catch up. With the borders of genetic testing always pushing forward, and the work developing valid PRS and epigenetic profiles for psychiatric illnesses, you will be back and ready to serve and teach all of us who need you now and in the future. Psychiatric genetics is just getting started!!! Just imagine in a few years, how predictive testing will allow us a to identify at-risk persons and intervene early to help prevent and minimize these diseases, with experts like you to help us bring this mainstream in a non-stigmatized and effective way. No, you are definitely not done!!!
I have always admired you – from the moment we met it was clear that you are a cut above and bound for great things (past and future). I use your work and videos in the classes I teach. You’ve really helped reduce stigma of psychiatric illness and helped make the complex less complicated to understand! (Love the marble model!!!). I can’t wait to see where you go next after you pause and regroup!!!
Thank you Jehaninne for your transparency and courage in writing this. The patients and families we have referred from the psychosis program at UBC hospital benefited from Adapt, and clinicians learned from the research you did with our population. So sorry but I hope we will continue to collaborate one way or another.
Your conviction and passion for psychiatric genetic counseling has always been inspiring! I have never had the privilege to meet/interact with you but always felt inspired after watching your educational videos. I have certainly changed the way I counsel patients in prenatal setting about mental health/asking questions about it. Please don’t give up!! You are amazing at what you do and I am sure will eventually figure out a way to pursue it further. Hugs!
Jehannine-
I am so sorry and outraged to hear of the closing of your clinic. It’s unconscionable. Its tough being a pioneer. A similar devastating thing happened to me in the early 90s before BRCA1/2 were found when admin closed our breast cancer clinic for bogus reasons. And look at the field now!
I believe that your phoenix clinic will rise again in new ways and places and I’ll be cheering you on. Your fan, June
I am sorry your clinic is closed. But, I am sure there are many people who you have helped.
I’ve suffered with mental health issues since I was 11. Of course at 11 years old it’s difficult to find the words to explain what I felt. As I matured and learned more about Mental health and got a diagnosis I was never ashamed of my situation and the Stigma is still so prevalent. However, thank you for your work.
Interesting. Thanks for sharing.