Special Session: Gene TherapyPatients’ Perspective on Gene Therapy for Hearing Loss As part of this panel discussion about gene therapy for hearing loss, Ms. Kagel will give voice to the patients’ perspective. Gene therapy offers some patient populations the option to utilize therapeutic intervention to normalize gene expression. In optimal outcomes, those populations may restore hearing to otherwise deaf, Deaf, hearing impaired, or hard of hearing patients. Generally speaking, patients want to be informed about medical interventions so as to make the right informed decision for themselves (or with loved ones). But, not all providers are willing to discuss the full range of treatment options, others are partial to specific treatment options, and others may not present the information in a way that is fully appreciable for the risks and benefits by the patient (and their loved ones). What obligations do providers have to inform patients of therapeutic interventions that may or may not align with the provider’s or the patients’ values? How much of an onus should be on the patients or loved ones to be informed and educated as to what therapies may exist and whether or how it is an option for their particular presentation? Caution must be exercised to identify and address paternalism in the therapeutic relationship specially in context of disability rights – especially that of the experience of the deaf, Deaf, hearing impaired, and hard-of-hearing.
Emma J. Kagel, JD, MBE, HCE-C, LPEC is an affiliate of the Center for Bioethics at Harvard Medical School and manages the Conflict of Interest program for the Beth Israel Lahey Health health system. Ms. Kagel received her JD from the University of Washington School of Law and her MBE in Bioethics from Harvard Medical School. She is a certified healthcare ethics consultant by the American Society of Bioethics and Humanities having spent over a two decades at the bedside in clinical consultations and overseeing clinical ethics programs before transitioning to research bioethics practice. She has also been involved in the Medical Legal Partnership space in healthcare systems to utilize legal levers to improve the social determinants of health. Ms. Kagel identifies as deaf with cochlear implants. Her personal and professional knowledge has informed her efforts in disability advocacy in healthcare, education, and legal settings.
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