Ethical debates swirl around gene-editing decisions

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[Editor’s note: Joselin Linder is the author of the book “The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future”]

Just the other day, an FDA panel approved a gene editing technique to cure a rare form of congenital blindness called Leber congenital aumaurosis (LCA). The cure for congenital forms of blindness is one of the gene editing techniques we’ve gotten pretty good at. For example, we’ve been able to gene edit out red/green color blindness in squirrel monkeys since at least 2009. Not so coincidentally, the cure for LCA was discovered around the same time. But the question comes up – Just because we can cure some things, does it mean that we should?

[A]lthough this cure is likely one of the very first drops in the bucket, we are far from gene editing out blindness from the world.


Another ethical issue already at play is socio-economic. IVF with PGD (the practice of selecting healthy embryos to prevent some genetic diseases) is expensive. Upwards of $30,000 for one attempt. Insurance programs don’t cover it yet, so if you are poor and you carry a rare genetic disease, your choices are don’t have children, or risk passing your gene. And that’s if somehow, in advance of pregnancy you know about the gene. Although I think it’s likely that soon we’ll ALL be genome mapped as part of our standard medical care.

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion, and analysis. Read full, original post: What are some ethical challenges that may arise from advances in genetics?

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