PGD for adult-onset neurological disease remains rare, with only a few hundred Huntington’s families and a handful of families with other neurodegenerative disorders using it to date. Primarily this is because few families know about this option, experts say. Most neurologists and primary care doctors do not discuss it with patients. Also, many young, so far healthy, adult children of an affected parent are unaware that they can get the procedure without having to find out whether they carry the disease gene themselves. Once families learn about PGD, they express great interest. The procedure has drawbacks as well. It is expensive and not covered by insurance in many states, and in vitro fertilization comes with stress and discomforts. In addition, some people have ethical concerns about using only some embryos from the IVF procedure. PGD is not regulated in the United States, and European rules vary widely. But PGD offers what no drug comes close to: eliminating early onset Alzheimer’s disease from a given family line for good.
A two-part Alzforum story reports the facts around PDG use for neurologic diseases (Part 1), and describes issues families confront when deciding whether PGD is right for them (Part 2).
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