‘THEY treat you like an ‘it’,” he said – one of 18 adults with intellectual disability, along with eight support people, we interviewed for a study exploring their medical care – particularly in genetic health care, where patients may undergo genetic testing related to their disability.
Our research highlights a pressing need for health professionals to rethink long-held assumptions and adopt more inclusive, person-centred, and respectful practices.
Our research team –spanning genetics, ethics, and education – also included self-advocate Julie Loblinzk who has an intellectual disability. Together, we formed GeneEQUAL, an inclusive research group committed to involving people with intellectual disability throughout the project.
The findings revealed a widespread pattern of exclusion. Many participants said health professionals often addressed their support person rather than them. Information was frequently shared in inaccessible ways, with little effort to use plain language or easy read formats.
This often left patients unsure why they were having genetic tests or what the results meant. Consent processes were confusing or bypassed entirely, and post-diagnosis support was frequently absent.
Genetic counselling can be confronting –raising questions about identity, family, and future health. Several participants said their diagnosis had led to emotional distress.
“I feel like I’m not normal now,” said Katrina. “My friends and family don’t mean to be mean, but they act like, ‘You’re not all there now.’”
The deficit-based language of genetics – terms like “mutation” and “abnormality” – can reinforce feelings of inadequacy.
As Aaron put it, “I knew I wasn’t normal to others. I knew some part of my brain was missing.”
Many participants didn’t know the name of their condition, recommended health checks, or treatment plans. Their GPs often lacked this information too.
But change is happening. Based on our research, NSW Health funded the GeneEQUAL Educational Toolkit, co-developed with self-advocates and clinicians. It includes easy read booklets and tools for delivering more accessible and respectful care.
Authors:
Elizabeth Emma Palmer, Iva Strnadová, Jackie Leach Scully, Julie Loblinzk
Extracts published from theconversation.com.au – 17 October 2024
