Tuesday, June 23, 2009

save yourself, but not your kids

Today on NPR there was an interview with a woman who decided, because she was a carrier of the BRCA1 gene and had a dramatically increased risk for developing breast cancer, to have a double mastectomy. This story broke on 2008, and she is being interviewed again because, along with the increased risk for breast cancer is an increased risk for ovarian cancer, but this woman decided to wait to have her ovaries removed until after she had a child.



She are so committed to not having breast cancer that she is willing to have all of her breast tissue removed, yet she apparently has no regard for whether her child may have to make that same decision. I don't have polite words to describe how infuriated I was this morning. Knowing that there is a 50% probability that her child (given that we know that it will be a girl) could inherit this destructive allele, she was so committed to having a biological child (with a sperm donor she's never met, and, incidentally, has not been tested as to whether his genome contains one or two copies of the BRCA1 cancer-causing variant), that she's willing to gamble with that child's future.

Why not adopt? Why not at least serve as a surrogate, getting both egg and sperm from BRCA1 negative individuals? What is so compelling about the need to reproduce that we humans will jump over every barrier in the way, even if it means condemning our children to a series of near-certain genetic ailments, emotional distress and premature death?

Certainly there are many other genetic abnormalities that can occur - other mutationst, non-disjunction, what have you - so perhaps she's hoping to win the coin toss.

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