Empowering Parkinson’s Patients: Proactive Consent for Optogenetic Trials
Saturday, September 21, 2024
11:30 AM – 12:30 PM CT
Location: Regency Ballroom B (First Floor)
Abstract: Optogenetics, the intersection of advancing genomic and neurotechnologies, unveils a promising scientific frontier for treating Parkinson’s Disease (PD), specifically patients that have existing deep brain stimulation. However, as neurodegeneration progresses in PD, patients lose the capacity to provide informed consent for research participation, potentially hindering their access to optogenetic technologies.
Despite not yet being implemented in clinical trials, ongoing research suggests optogenetics may reverse the neurodegenerative effects of PD. Furthermore, the recent approval of CRISPR, a gene-editing technology, demonstrates a promising approval trajectory of similar therapeutics, like optogenetics, for clinical trials. However, individuals diagnosed with PD today may be too far advanced in their disease progression to participate in forthcoming clinical trials. The process of obtaining informed consent is particularly challenging for PD patients due to the correlation between advancing neurodegeneration and diminished decision-making capacity. Consequently, those lacking a designated power of attorney or supportive family members may be unable to participate in clinical trials (whether altruistic or potentially life-saving) due to their inability to provide informed consent.
In light of these challenges, I aim to present a proactive approach model wherein PD patients with decision-making capacity are offered the opportunity to provide consent in advance for potential participation in forthcoming clinical trials. This proactive stance considers the desires of less advanced PD patients and seeks to ensure equitable access to emerging therapies that foster greater inclusivity in research endeavors aimed at reducing the effects of PD.
Learning Objectives:
After participating in this conference, attendees should be able to:
Describe the relationship between neurodegeneration and decreased access to novel treatment due to consent limitation.
Assess the ethical obligation to ensure equitable care for all Parkinson’s patients regardless of disease progression.