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Is it ethical to publish your baby’s genome?

Gene Expression
By Razib Khan
Oct 16, 2011 10:48 PMNov 19, 2019 9:54 PM


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That's what a reader below asks. To some extent I wondered this when Dan MacArthur and Ilana Fisher put their genotypes out there. They have a son, and so now you can generate a likely matrix of risks for Tobias MacArthur since you have his parents' genotypes. Since he's only a bit over a year old I doubt anyone could obtain his consent in the matter. But this is a far cry from putting Tobias' genotype out there without asking him. I suspect that genetic counselors would want to gather together a lynch mob for the first parents that did this. But then again, this is a quantitative issue, not a qualitative one. Genetic risks are by and large probabilistic even if you know someone's genotype. Instead of having to generate a distribution of outcomes from their parents you have the specific pairs of alleles. So you get a more precise understanding, but it's not necessarily a game changer. Additionally, there are parents who publish memoirs...and write blogs, where they divulge a lot of personal information about their children (explicitly and implicitly) without their consent. Again, the issue about genetics being different from other personal information seems to loom in the background here. In some ways it is different because it's relatively fixed. You can't just get a new genotype from the social security information, and your parents' genotype isn't going to change. But as readers have observed phenotype is already a rather good signal of genotype.

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