The StrongHER Side Project

How Genetic Testing is Changing for Families | Associate Professor Ali Archibald


Listen Later

In this heartfelt episode, Hannah welcomes Alison Archbold, an esteemed Associate Professor, Genetic Counsellor and Researcher to explore how genetic testing and counseling are revolutionizing healthcare and empowering individuals with life-changing information.

Alison discusses the critical gaps she has identified in access to genetic testing in Australia, especially around reproductive genetics and screening for conditions like cystic fibrosis, fragile X syndrome, and spinal muscular atrophy. 

 

This topic is more than just work for Alison, it is person.  When she found herself on the patient side of prenatal diagnosis - twice - she experienced firsthand how disorienting that space can be — the uncertainty, the emotional intensity, and the full impact of the experience when you are living it. That deepened my understanding of how vulnerable that period is, and how much support people need beyond just the medical facts.  

 

She shares one truth that isn’t talked about enough - the sheer emotional and cognitive load that families carry every single day.

 

It’s not just about supporting a child — it’s holding the emotional weight for everyone: their child, themselves, their partner, their broader family. Constantly checking in, anticipating needs, making sure people are okay, and holding things together, often without much space to process their own experience.

 

Alison shares her journey from witnessing the devastation of undiagnosed genetic conditions to pioneering programs that make screening more equitable and accessible, including the impactful advocacy that led to Medicare funding for carrier screening in Australia. 

 

This shift has truly democratized genetic testing, enabling over 120,000 people annually to learn about their genetic risks and make informed choices.

 

We break down the emotional and social cadence of navigating complex genetic results, especially during pregnancy, and Alison reveals how early access to genetic information transforms the emotional landscape for families, shifting from reactive diagnosis to proactive planning. 

 

She discusses her innovative GenoCare service and how she is actively building and testing new models that integrate genetic counselling with psychosocial support, grounded in real-world clinical need. This means not only observing gaps in care — Alison is working to redesign how care is delivered so that it is more accessible, coordinated, and responsive to what patients actually need.

 

Her compassionate insights help demystify remote and accessible genetic counseling, addressing practical steps for those seeking guidance to navigate the psychosocial impacts of genetic testing on mental health, mood, and future planning.

 

Why should you listen now? Because advancing genetic science means more families are facing difficult choices and emotions. Alison emphasizes that supporting mental health and emotional wellbeing in the face of genetic diagnoses isn’t just a nicety -it’s a necessity. She highlights how genetic counseling combines medical expertise with empathetic care, helping families process complex information, reduce anxiety, and foster resilience during vulnerable times. 

 

Whether you're pregnant, considering testing, or supporting loved ones, understanding these shifts empowers you to advocate for better, more compassionate genetic services.

 

This episode is perfect for pregnant women, new parents, healthcare providers, and anyone interested in the intersection of genetics, mental health, and social equity. 

 

Alison’s dedication to making genetic care accessible and supportive demonstrates how we can shape a future where science uplifts families rather than overwhelms them. 

 

We are sharing practical tools, inspiring stories, and the emerging innovations that are making genetic counseling an essential pillar of wellbeing and reproductive health.

 

CONNECT WITH ALISON: 

Associate Professor Alison “Ali” Archibald is a genetic counsellor, clinician-researcher, and Co-Founder of GenoCare, a new service developing and delivering forward-thinking models of care in genomics. She is a recognised leader in reproductive genomics, with a focus on scaling equitable access to genetic testing. Ali’s work spans research, clinical practice, and service design, with a strong emphasis on innovation in care delivery and improving the experience of genetic testing.

 

www.genocare.com.au

Linked In 

WAIT... WE HAVE SOMETHING FOR YOU 

Discover what fills your cup when you're running on empty, take our What's Your One Thing quiz in under 2 minutes and get your personalized result, or download our Monthly Planner designed specifically for mothers raising children with disabilities who need to plan around the unpredictable, one month at a time, purpose over pressure.


👉 Take the quiz: https://www.strongherside.com/one-thing-quiz


👉 Download the planner: https://www.strongherside.com/planner


CONNECT WITH THE STRONGHER SIDE


📱 Instagram: @strongherside


🌐 Website & Resources: https://www.strongherside.com

📧 Partnerships & Media: [email protected]




P.S: Don't forget to:


✔️ Hit follow wherever you're listening to this podcast


✔️ Share this episode with a mama who needs to hear it

✔️ Rate us on Spotify or Apple, five stars really helps us reach more mothers


We love you. Thank you for being part of this community.

 

Note: The information provided on this podcast is for general educational purposes only and does not take into account your personal situation. It is not a substitute for professional advice. We recommend you seek a medical or healthcare professional if you are seeking advice, diagnosis or treatment.


KEYWORDS FOR SEO:

disability mums, mental health for mothers, cognitive load, mindset for caregivers, raising children with disabilities, autism mums, Down syndrome parents, chronic stress, nervous system regulation, survival mode, mental load, maternal burnout, special needs parenting, disability advocacy, mindset tools, cognitive offloading, ADHD parenting, cerebral palsy parents, rare disease parents, fragile X syndrome, invisible labour

 

...more
View all episodesView all episodes
Download on the App Store

The StrongHER Side ProjectBy Hannah Gair