Increasing inclusivity in precision medicine research: Views of deaf and hard of hearing individuals |
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| Authors: | Diana C Garofalo Howard A Rosenblum Yuan Zhang Ying Chen Paul S Appelbaum Maya Sabatello |
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| Institution: | 1. Department of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY;2. National Association of the Deaf, Silver Spring, MD;3. Department of Biostatistics, Mailman School of Public Health, Columbia University, New York, NY;4. New York State Psychiatric Institute, New York, NY;5. Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Department of Psychiatry, Columbia University Irving Medical Center, Columbia University, New York, NY;6. Center for Precision Medicine and Genomics, Department of Medicine, and Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY;1. School of Medicine Greenville, University of South Carolina, Greenville, SC;2. Center for Bioethics, University of South Carolina, Columbia, SC;3. Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY;4. Vanderbilt University Medical Center, Nashville, TN;5. Phoenix Children’s Hospital, College of Medicine, The University of Arizona, Phoenix, AZ;6. Optum, Eden Prairie, MN;7. Color Genomics, Burlingame, CA;8. Patient Advocate, Greenville, SC;9. GeneDx, Gaithersburg, MD;10. Homer Stryker M.D. School of Medicine, Western Michigan University, Kalamazoo, MI;11. Divisions of Medical Genetics and Molecular Diagnostics, Departments of Pathology & Laboratory Medicine, Pediatrics, and Human Genetics, UCLA School of Medicine, Los Angeles, CA;12. The UCLA Institute for Society and Genetics, Los Angeles, CA;13. American College of Medical Genetics and Genomics, Bethesda, MD;1. Department of Genetics and Computational Biology, QIMR Berghofer Medical Research Institute, Brisbane, Queensland, Australia;2. Ambry Genetics, Aliso Viejo, CA;3. Latin American School of Oncology, Los Angeles, CA;4. Molecular Pathology Laboratory, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia;5. Parkville Familial Cancer Centre, Peter MacCallum Cancer Centre, and Royal Melbourne Hospital, Melbourne, Victoria, Australia;6. Sir Peter MacCallum Department of Oncology, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Victoria, Australia;1. Waisman Center, University of Wisconsin-Madison, Madison, WI;2. Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, NC;1. Division of Cardiology, Department of Medicine, Faculty of Medicine, and Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada;2. Divisions of Human Genetics and Cardiovascular Medicine, Department of Internal Medicine, College of Medicine, The Ohio State University, Columbus, OH;3. Department of Pharmacology and Center for Genetic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL;4. Ambry Genetics, Aliso Viejo, CA;5. Department of Genetics, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC;6. Autism & Developmental Medicine Institute, Geisinger, Danville, PA;7. Division of Genetics & Genomics, Boston Children’s Hospital, Boston, MA;1. Institute of Medical Genetics, University of Zurich, Zurich, Switzerland;2. Zurich Center for Integrative Human Physiology, University of Zurich, Zurich, Switzerland;3. Neuroscience Center Zurich, University of Zurich and ETH Zurich, Zurich, Switzerland |
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| Abstract: | PurposeDeaf/hard of hearing (HoH) individuals can benefit from precision medicine research (PMR) but are underrepresented in mainstream health research and may experience barriers to participation. Understanding their views and concerns about PMR can inform processes to foster inclusion in future studies and reduce health disparities.MethodsWe administered an online disability-accessible survey to explore perceptions of PMR among, inter alia, deaf/HoH individuals. Questions included willingness to participate, interest in results, and barriers and facilitators to participation. Analyses describe results for participants who self-identified their primary condition as being deaf/HoH and compared results for key demographic characteristics.ResultsA total of 267 deaf/HoH participants completed the survey. Interest in PMR was high, although many reported inaccessible facilities and information about medical research; 51% reported that communication with health professionals is a barrier. Concerns about harm, lack of access to benefits, misinformed allocation decisions, and limited disability-relevant knowledge among researchers and health care providers were significant. Differences across racial, ethnic, and sex groups were observed and are discussed.ConclusionStrategies to remove barriers to participation of deaf/HoH individuals in PMR are suggested. Distrust is a major challenge for cohort diversity, and research is needed to identify measures to increase the trustworthiness of PMR endeavors. |
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| Keywords: | Accessibility Deaf/Hard of hearing individuals Health disparities Precision medicine research Trust |
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