Tag Archives: genetic disease

Pondering Gene Therapy for Stargardt Disease (I)

Ethical questions about genetic disease and genetic research have been much on my mind since I heard a provocative talk on Citizen Bioscience in the Age of New Media, presented by Marina Levina, at MiT7. The protection of human subjects in research is one of my longstanding professional and scholarly interests. It also holds a deeper, personal significance for me. I have a genetic eye disorder called Stargardt disease. Continue reading






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Gene Therapy Helps Children With Congenital Retina Disease

I wrote about the complex relationship between my genetic disease and its possible “cure” in Not This Pig. At my age and stage of blindness, I don’t know whether I’d choose the experimental gene therapy published Oct. 24 in The Lancet (reported below by Jocelyn Kaiser in ScienceNOW), but I can understand its prospect for young children with retina diseases.






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