Counseling Patients About Gene Therapy

Tips for setting realistic expectations about eligibility, outcomes, and treatment barriers.

By: Kari Branham, MS, CGC, Michelle Alabek, MS, CGC, Dana Schlegel, MS, MPH, CGC

Retinal Physician October 1, 2025 Vol 22, Issue October 2025 Page(s): 14-15, 18

5 Key Takeaways

1

Gene therapy represents a significant advancement in treating inherited retinal diseases (IRDs), with one FDA-approved option currently available.
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Eligibility for gene therapy is primarily determined by genetic testing, requiring specific pathogenic variants to be identified.
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Patients may have unrealistic expectations about gene therapy outcomes, often believing it can restore vision to normal.
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Involving genetic counselors can aid in interpreting test results and clarifying eligibility for gene therapy.
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Providers should discuss expected outcomes with patients to align treatment options with their personal goals and values.

Kari Branham

Specialties: Genetic counseling for inherited retinal disease

Bio: Kari Branham, MS, CGC, is a certified genetic counselor whose work includes patient counseling related to inherited retinal disease and gene therapy. She has written about helping patients understand eligibility, expected outcomes, and treatment barriers as gene therapy becomes part of care for inherited retinal diseases.

Contributions:

https://retinalphysician.com/issues/2025/october/counseling-patients-about-gene-therapy/

Michelle Alabek

Specialties: Genetic counseling for inherited retinal disease and gene therapy

Bio: Michelle Alabek, MS, CGC, is a certified genetic counselor whose work focuses on patient counseling related to inherited retinal disease and emerging gene therapy options. In Retinal Physician, she has written about helping patients and families develop realistic expectations about eligibility, outcomes, treatment barriers, and risk-benefit considerations when evaluating gene therapy.

Contributions:

https://retinalphysician.com/issues/2025/october/counseling-patients-about-gene-therapy/

Dana Schlegel

Specialties: Genetic counseling for inherited retinal disease and gene therapy

Bio: Dana Schlegel, MS, MPH, CGC, is a certified genetic counselor whose work includes patient counseling considerations for inherited retinal disease and emerging gene therapy options. In Retinal Physician, she has written about counseling patients with inherited retinal disease on gene therapy, including eligibility, expected outcomes, treatment barriers, and the importance of balanced information to support informed decision-making.

PentaVision

Retinal Physician

Counseling Patients About Gene Therapy

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