Considering the impact of AI on the disability community
The tools can be helpful, but they should be used with caution
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In 2024, part of North Carolina, my home state, was in the path of Hurricane Helene. With its powerful winds and torrential rain, Helene battered many communities. I was lucky I wasn’t in its path. In the aftermath of its destruction, many North Carolinians rallied in support of those affected.
In the midst of all this, an image was shared across various social media platforms of a teary-eyed girl in an orange life jacket, sitting in a rescue boat, clutching her small puppy. It sparked an emotional reaction within me before I could fully process it. Whoever generated it designed it to do so.
Sympathy hit me before I started noticing odd things about the image — certain proportions were a bit off, body parts were missing, the skin was too smooth, and the levels of detail were inconsistent. These were telltale signs of generative artificial intelligence (AI). Today, AI tools can create more impressive and realistic images.
Whether we like it or not, the age of AI is here. We’ll have to discover what that means for each of us and adapt accordingly. This, of course, includes those of us in the Charcot-Marie-Tooth disease (CMT) and broader disability communities.
A healthy skepticism
With the growing prevalence of AI tools in everyday life, I find myself mistrustful — not of the technology per se, but of the ability of large tech firms to reliably act in their users’ best interests.
Nevertheless, the usefulness of AI tools is clear across many applications, including CMT research.
As Katherine Forsey, PhD, the Charcot-Marie-Tooth Association‘s (CMTA) chief research officer, told me in an email, “Much of the work we fund today incorporates AI-enabled tools — whether for imaging, data analysis, gene and target discovery, outcome measures and biomarker identification, or treatment development. While AI is rarely the sole focus, it is increasingly embedded across our entire research pipeline.”
In a separate email exchange, Meghan Drummond, PhD, the vice president of research and drug development at the CMT Research Foundation (CMTRF), wrote that both AI tools and machine learning techniques are force multipliers for the research teams the CMTRF partners with.
“[AI tools and machine learning] can lower costs, timelines, and increase the predictability of outcomes. That said, they are not magic. It is critical to invest in advancing these tools thoughtfully and with diligence so that we don’t overinterpret what an AI model might predict or put more confidence behind a model than is justified,” Drummond said.
Granted, many of us aren’t professional researchers with large datasets from research that need interpretation. Instead, those of us in the disability community may use consumer-grade AI tools to help fill gaps in the healthcare system. Many of us don’t have easy access to physicians with deep knowledge of our rare conditions, and few of us have the technical knowledge to interpret test results or clinical jargon.
Perhaps AI technology can help democratize care. However, just as researchers are careful in their application of AI tools, everyday users should practice similar caution.
A few weeks ago, I spoke with Kenny Raymond, head of communications at CMTA. While he’s a fan of using AI both professionally and personally, he said, “[Consumer-level] AI tools are all basically large-language models designed to, first, recognize texts and then try to predict what comes next. They don’t care about correctness or accuracy. And they should definitely not be used as a source of truth.”
Ultimately, just as I’ve learned to employ a healthy skepticism toward images that appear in my social network feeds these days, it’s perhaps more important than ever to verify information as we fly into this new world of AI technology. And many tech firms still need to earn our trust.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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