Is it ethical to publish your baby’s genome?

By Razib Khan | October 16, 2011 1:48 pm

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.

CATEGORIZED UNDER: Personal Genomics
MORE ABOUT: Personal genomics
  • http://blogs.scientificamerican.com/thoughtful-animal Jason G. Goldman

    I think its fairly reasonable to argue that the amount of information you can glean from genetic data beyond the information you already have from phenotype and family history information is marginal, at least as far as the practical use of that information goes.

    And the amount of phenotypic/family history information that gets shared by lots of mommy (and daddy) bloggers (intentionally or otherwise) is tremendous, at least in my experience.

  • http://www.aspergerschild.org/ Xanthe Wyse

    I blog under a pen-name, as the topics I blog about come with stigma and I don’t want to be looked up and judged by potential employers etc.

    I’m sure medical insurance & life insurance companies would love to get their hands on genetic info – so they don’t insure people they consider high risk.

    The science fiction movie Gattaca was about discrimination on genetics.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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