Prenatal Genomics

By on June 21st, 2014 in Ethics

A genomics researcher, Razib Khan, sequenced his child’s genes prior to birth, a first for the U.S. with a “normal” child.  This is described, with some of the legal and other issues in an article in MIT’s Technology Review. Khan comments on the issue of “who owns a genome” in this article and part of a regular Blog he posts. Just to be clear, this is the 6 billion base pair analysis, not the half billion 23andMe form, so he now has most of the story.  I don’t think full Genome analysis addresses epigenetic information such as methyl groups and histone variations. These can affect gene expression, and also reflect a path for passing information from generation to generation without mutation and as a result of the activities of the parent.  So, yes, it appears your smoking, drinking, etc. can affect your children and grandchildren — actually one of the evident connections is between famine and longevity of grandchildren.

The FDA is currently blocking 23andMe from providing health analysis related to their genomic testing, but for clients, the results are available in raw form, and online sites allow cross checking. Of course in the world of the Internet, most attempts to control information are futile.  A software package Promethease provides analysis via a literature search “for free”.  Of course one might worry about what the creators of that package do with the information besides telling you about the genome you submit (presumably your own).  It seems that the FDA, while trying to protect consumers from “medical advice not provided by a professional”, have pushed the  liability and challenges associated with this from a contractually obligated partner to the open internet.

Looking forward, we can anticipate that genome sequencing will be available to the public, at least in “free” countries, and that analysis will be possible with varying degrees of quality control in such environments.  It would seem the medical, policy, and ethical community might be better served by focusing on articulating the issues and educating the public rather than trying to get the genie back in the bottle (or should I say the Genome back in the bottle.)

Also see Humans by Design

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