Wednesday, April 30, 2025
4/30/2025
Investigating Ethical Challenges in Emerging Precision Medicine Research with Disability Communities: The Case of Cerebral Palsy - Innovations in precision medicine are rapidly changing scientific understandings of the causes of and potential treatments for the broad range of health conditions affecting the one-in-four Americans living with disabilities. Alongside the potential benefits of precision medicine research (PMR) initiatives comes a diversity of perspectives on the role PMR and precision medicine should play in treating or curing disabling conditions. However, little is known about the perspectives of disability communities towards emerging PMR into conditions that have not historically been understood as genetic. Prospectively facilitating values alignment raises ethical and political challenges. Existing literature on disability inclusion and anti-ableism in PMR provides insufficient guidance on how to facilitate consensus among the perspectives of researchers, people with disabilities, their caregivers, and clinicians. Using emerging PMR on cerebral palsy (PMR-CP) as a case study, the overall objective of this K01 is to prospectively align the values of precision medicine researchers and diverse disability communities in order to guide development of diagnostics and treatments that better serve the needs of those with disabilities. The proposal has three specific aims. AIM 1: Assess the values and priorities of key stakeholders in PMR-CP, using semi-structured interviews to characterize how they perceive potential benefits and harms of PMR-CP. Stakeholders will include PMR-CP researchers, adults with CP and primary caregivers of those with CP, and clinicians caring for CP patients. AIM 2: Using data from Aim 1, create and test briefing materials for guiding democratic deliberation on PMR-CP. AIM 3: Using the data from Aim 1 and materials developed in Aim 2, facilitate deliberative democratic sessions with members of the stakeholder groups interviewed to negotiate consensus on the ethical values that should motivate future PMR-CP, which can serve as a model for other disabling genetic conditions. Dr. Mintz will achieve these aims by drawing on his current skills in special education, political theory, and clinical bioethics, as well as on additional training in human genetics and genomics and empirical deliberative democracy methodologies. Dr. Mintz’s approach to the project will also be informed by his lived experience of cerebral palsy. His proposed training and research will take place at the Stanford Center for Biomedical Ethics. Dr. Mintz is already widely respected in disability bioethics for his scholarly accomplishments and for breaking down barriers for people with disabilities. Through the support of this award, Dr. Mintz will build upon his current expertise to become one of the few disability bioethicists who is trained in genetics and empirical approaches to deliberative democracy. If successful, his research will refine a methodology for negotiating consensus among precision medicine researchers, members of the CP community, and clinicians, which can be used as a model for other disabling conditions.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).