Obstacles, Opportunities, and Ethical Considerations for Genomic Investigations of Individuals Continuously Hospitalized with Treatment-resistant Schizophrenia
Year: 2025
Type: article
Abstract: Background and Hypothesis: found within this heterogeneous population. But individuals committed to state psychiatric institutions have been routinely excluded from research because of concerns that they may not be able to understand or provide adequately informed consent. While reasonable, we believe this approach has enabled policies that support implicit bias, contribute to health care disparities, and limit our knowledge of disease mechanisms and treatment. Study Design: This article provides brief reviews of (1) ethical considerations when recruiting individuals with severely treatment-resistant psychotic symptoms for research, (2) the impact their condition has on decision-making capacity, and finally (3) we provide a first-hand narrative of our experience conducting a genomic study of involuntarily hospitalized individuals and the opportunities/obstacles we encountered. Study Results: Evidence from published literature shows that cognitive impairment, rather than severity of psychopathology, is the greatest threat to decisional capacity. Ethical safeguards and practical considerations have been developed, including (1) institutional/local research committee review and approval, (2) confidentiality, (3) informed consent, (4) assessment of capacity, and (5) community engagement. Our experience demonstrates that carefully selected involuntarily committed individuals can be included in research. Conclusions: With ethical safeguards, these individuals deserve the opportunity to volunteer for research regarding the mental illness that has profoundly shaped their lives-to do otherwise is discriminatory.
Source: Schizophrenia Bulletin Open
Institutions: The University of Texas Health Science Center at Houston, University of California, Los Angeles, Rutgers, The State University of New Jersey, University of Pennsylvania, Geisinger Health System, Harvard University, Massachusetts General Hospital, University of North Carolina at Chapel Hill, Karolinska Institutet
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,662
Funders: Support for Pioneering Research Initiated by the Next Generation, Bill and Melinda Gates Foundation, Alzheimer's Association, Conquer Cancer Foundation, Breast Cancer Research Foundation, Amgen, Chesapeake Bay Program, American College of Cardiology Foundation, Cure Alzheimer's Fund, University of Wisconsin Carbone Cancer Center, Regeneron Pharmaceuticals, Exelixis, Hospital for Special Surgery, Ministerio de Ciencia, Innovación y Universidades, Arrowhead Pharmaceuticals, Duke-NUS Medical School, Alzheimer's Society, Japanese Foundation for Research and Promotion of Endoscopy, Heidi Seiler-Stiftung, Tamura Science and Technology Foundation, National Institute for Health and Care Research, Rosetrees Trust, National Research Foundation, Department of Science and Technology, Ministry of Science and Technology, India, Indian Council of Medical Research, Deutsche Forschungsgemeinschaft, Agence Nationale de la Recherche, Ministry of Education, Culture, Sports, Science and Technology, Schweizerischer Nationalfonds zur Förderung der Wissenschaftlichen Forschung, National Natural Science Foundation of China, Bundesministerium für Bildung und Forschung, Generalitat de Catalunya, Ministero della Salute, Nederlandse Organisatie voor Wetenschappelijk Onderzoek, Huazhong University of Science and Technology, Henan University of Technology, Korea Health Industry Development Institute, Ligue Contre le Cancer, Jawaharlal Nehru Centre for Advanced Scientific Research, Universidad de Huelva, China Academy of Chinese Medical Sciences, Deutsche Herzstiftung, Universidad Rey Juan Carlos, Chongqing Municipal Education Commission, Institut Gustave-Roussy, Iketani Science and Technology Foundation, Tokuyama Science Foundation, Yazaki Memorial Foundation for Science and Technology, Hellenic Society of Medical Oncology, H. Lundbeck A/S, Ministry of Science and ICT, South Korea, Natural Science Foundation of Sichuan Province, Agency for Healthcare Research and Quality, Chugai Pharmaceutical, Japan Society for the Promotion of Science, Science and Engineering Research Board, Health Services and Delivery Research Programme, Agencia Estatal de Investigación, National Key Research and Development Program of China, National Institute on Aging, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Center for Advancing Translational Sciences, NCCR Catalysis
Awards: G2878046959, G718746359, G8089189751
OpenAlex ID: W4413991663