Accelerating genetic literacy using AI and genetics expertise

Accelerating genetic literacy using AI and genetics expertise
By Lois Lander and Kiana Roberts
Lois Lander
Manager, Health Counseling
Jan 29, 2024

Genetics is playing an ever-larger role in medicine, from genetic testing to precision medicine. As our genetics knowledge continues to advance at a rapid pace, a focus on genetic literacy—the understanding of genetics and related concepts—is key to helping agencies create genetic information that the public can trust, understand, and integrate into their decision-making process.

From our decades of work developing content and patient-education materials for federal health agencies and programs, such as NIH’s Genetic and Rare Diseases Information Center (GARD) and National Library of Medicines’ (NLM) MedlinePlus, we know how important it is to have subject-matter experts such as genetic counselors and consumer health experts providing guidance. These specialists excel at disseminating scientific knowledge in plain language.

But what happens when you add emerging technologies such as generative AI and natural language processing to the process, giving technologists a seat at the table alongside the geneticists and consumer health experts? As we’ve incorporated new tools into our domain-led process, we have found that they can dramatically increase the public’s understanding of genetics, making complex health information more accessible to wider audiences.

Finding power at the intersection of technology and domain

Tech applied in a vacuum is not the answer; it’s crucial to maintain a focus on the people you’re trying to reach with your genetic health materials. This is why the combination of genetic counselors, consumer health experts, and technologists is so important. By bringing the three disciplines together, we can effectively determine what needs to be communicated, how to best communicate it, and how to apply tools such as AI and natural language processing in a safe and thoughtful way to amplify impact and improve genetic literacy.

Emerging technologies help us improve genetic literacy faster than ever without sacrificing accuracy.

Our approach has evolved with technology so we can help agencies best serve their users. For example, we’ve been working with GARD for over 10 years to support their data and make it more accessible to both scientists and the public. We started by supporting the overhaul of the National Center for Advancing Translational Sciences (NCATS) IT systems to increase capacity and better manage and track data for GARD. Now, we’re working with them to pilot a generative AI tool to create patient-friendly summaries about rare and genetic diseases, using AI to translate complex medical literature into plain language, and collaborating with NLM to make complex science and health information in research articles more understandable to a general audience and for use in machine learning models.

These tools help us move faster than ever without sacrificing accuracy, letting us update and develop plain language information quickly, increasing the number of quality patient-education materials, expediting the availability of resources, and reducing the effort to maintain such a large library. In addition to using these technological tools to quickly create high-quality, plain language genetic materials for the public, they can be used to benefit research. Human-aided natural language processing can also be applied to create a high-quality dataset that can be used by the public as a reference, and by scientists to train their own deep learning algorithms.

Looking ahead with emerging technologies

Federal agencies can harness data science to develop materials to enhance genetic literacy, which is needed now more than ever. Even beyond text-based information sheets about genetics and related concepts, AI can be used in genetics-learning games to make lessons more engaging. It can translate materials into different languages or make them more accessible in a variety of ways for people with different learning needs. Perhaps, when the technologies are honed, AI might power an intake chatbot or a virtual genetic counselor able to answer patients’ individual questions in real time.

In addition to powering innovation, AI can help government agencies become more efficient. When technology is applied in safe and responsible ways to the mission, agencies can save time and maximize resources without compromising on the quality or accuracy of health information.

Empowering patients to make more informed health decisions is the ultimate outcome of integrating cutting-edge technologies with specialized knowledge in public health and genetics.

Meet the authors
  1. Lois Lander, Manager, Health Counseling
  2. Kiana Roberts, Program Manager, Program Management Consulting

    Kiana is a program management expert with over 20 years of experience in budgeting and fiscal accountability, staff management and oversight, and client management. View bio

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