Group of people of various ages and ethnicities sitting in a circle talking. At least one of the people is in a wheelchair.

Rethinking Inclusivity in Precision Medicine Research: The Disability Experience and Barriers to Participation

By Maya Sabatello and Paul S. Appelbaum

One of the most important aspects of precision medicine research is its focus on inclusion of diverse groups. The reality is that without cohort diversity, it will be impossible for precision medicine research to deliver on its promise to provide prevention and therapeutic options that are tailored to each individual’s genetic makeup, environment, and lifestyle choices across diverse groups. And, as the scientific community, including the national All of Us Research Program, increasingly has come to realize, for precision medicine to reduce—rather than magnify—health disparities, it is critical to ensure that historically marginalized communities are included in this research endeavor.

Persons with disabilities constitute the largest health disparities group in the U.S., but for various historical and sociocultural reasons, they have largely been absent from the conversations on precision medicine research.

As we and our colleagues discuss in our recent article in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), there is a need to shift the conversation to consider how precision medicine research can cultivate inclusivity. Based on findings from our national survey of almost 1,300 people with disabilities, we highlight three issues: interest in participation, barriers to participation, and community engagement.

People with disabilities are highly interested in and supportive of precision medicine research—exceeding the support found in studies of the general public. They are similarly willing to contribute various types of data for research and are invested in having a say in research design and other research-related decisions.

But this enthusiasm will not translate into practice without a concerted effort to remove barriers to participation. Indeed, most of our participants (76 percent) identified between three and eight barriers to their participation in precision medicine research, including issues such as inaccessible environments, transportation challenges, communication difficulties with healthcare professionals, concerns about harm from research, and lack of disability-related knowledge among researchers and healthcare providers topping the list.

Developing studies following the principles of universal design—i.e., studies should be accessible, easy to understand, and useful to people with a wide range of abilities—must be a first step, though attention should also be given to ensuring that the needs of specific subgroups of people with disabilities are addressed (e.g., people who are blind or with low vision and to improving researchers’ disability-related knowledge.

One way to begin this process of inclusion is community engagement. Engagement of racial and ethnic communities in decisions about the questions to be answered and the methods used has been recognized increasingly as an essential component of respectful precision medicine research. There is a need to extend these efforts to people with disabilities and disability communities (e.g., Deaf and Autistic Communities), whose experiences and health needs may vary significantly from other members of their racial/ethnic groups. Viewing such research participants as equal partners will be necessary, as is the development of disability-sensitive and culturally appropriate strategies for engagement that are geared towards developing trust in and trustworthiness of precision medicine research.

The marketing of precision medicine as the new healthcare model that aims to benefit all of us comes with a great responsibility to ensure that such research is, indeed, inclusive of everyone and that it upholds the values of social justice. Sailing the boat without engagement with and removal of barriers to participation experienced by people with disabilities will mean leaving behind 20-25% of the U.S. adult population.

 

Maya Sabatello LLB, PhD, is an Assistant Professor at the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Department of Psychiatry, Columbia University.

Paul S. Appelbaum, MD, is the Elizabeth K. Dollard Professor of Psychiatry, Medicine and Law at Columbia University, and director of the Columbia Center for Research on Ethical, Legal, & Social Implications of Psychiatric, Neurologic, and Behavioral Genetics. 

 

One thought to “Rethinking Inclusivity in Precision Medicine Research: The Disability Experience and Barriers to Participation”

  1. It’s so vast precision medicine. Within all sociocultural communities there are many with medical primary conditions with significantly high rates of illnesses. We must proceed to reach out to find beneficial targeted recruitment in major cities, to isolated outside the main stream. Hospitals and both urban and rural communities need our most talented and interested medical researchers
    Columbia University is in the forefront for research in sleep deprivation. More we need more participants.

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