Bioethics News

Gene Therapy Offers Hope for “Worst Disease You’ve Never Heard Of”

December 22, 2016

(MIT Technology Review) – Epidermolysis bullosa has been called “the worst disease you’ve never heard of.” Its victims must bandage themselves and suffer unrelenting pain. In the Netherlands, which allows euthanasia, two children have been killed to stop their suffering. Gene therapy offers a possible new way to treat the condition, which in Roeder’s case is due to a DNA mutation that prevents her body from producing type-7 collagen, the material that anchors the upper and lower layers of the skin together.

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