Health Equity Questions to Consider in Somatic Cell Gene Editing Research

Who is most impacted by these conditions? Could there be groups of people under-diagnosed that would change these demographics?
How does the condition impact peoples' lives beyond symptoms and obvious healthcare costs - missing work, no private health insurance, food insecurity, housing, poor quality of life, etc.?
If any AI or machine learning is used during the process, is the information that taught the AI/ML tech biased in any way?
How are patients learning about gene therapies? How does this education reach people of diverse backgrounds?
For clinical trials: is the sample population representative of the patient population?
What preparatory and follow-up care is required? How do costs or time associated with these impact who can get the therapy?
Who can access therapies once they are approved? How can this be done equitably in the US and around the world?
Will age impact who is able to get therapy? How can these impacts be safely mitigated?
For prenatal somatic gene editing, how does the mother's access to prenatal care impact the child's opportunity to receive relevant therapies?
How can we continue to test, conduct long-term follow-up on, and improve therapies and therapy protocols to help diverse patient populations?
How do we prioritize testing therapeutic efficacy in diverse populations for therapies that were designed off of genome samples that do not accurately represent the patient population?

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Research Priorities: Health Disparities

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