11 September 2013

Entering the "Growing Up Genomic" World

Carey Goldberg recently wrote an article titled "Growing Up Genomic: What Happens When You Know All A Baby’s Genes?" for Boston's NPR Station WBUR's Common Health.1 The article is about an upcoming research project, BabySeq, in which 240 newborns will have their full genome sequenced, 240 newborns will not be sequenced, and the two groups will be followed to learn how this information affects their lives.

It is a thought-provoking interview with one of the project directors. The article reminds us of how much we don't know about DNA yet and how much we have to learn about how to ethically handle genetic information in the future. For several years the genetic genealogy community has been having discussions with geneticists who generally work with medical patients about ethics, informed consent, and patient reactions to what they learn from their DNA—medically and genealogically. Some of us are better able to handle unexpected findings than others.

One section of Goldberg's article describes many genetic genealogists:
On the other side of the spectrum are people who are true information seekers, people who are excited about learning absolutely as much as they can about the future of themselves and their children. They’re people who are willing to receive ambiguous and uncertain information, they’re willing to live with it. And we’re seeing more and more of those people, people who are asking for any and all information about their future health from the medical establishment.2

Many genetic genealogists freely share DNA information and encourage others to do so. I'm a little more conservative. Because there is so much we don't know yet, I encourage relatives and clients to be more careful about what they share, especially on public sites without strong security and privacy policies. As far as we know today, there is little medically-significant information in the DNA we are using for genealogical research unless you test with a company that includes medically significant information in your raw data file or in your DNA analysis.

Some people have difficulty accepting the genealogical information revealed in DNA. I'm more interested in knowing the truth, but I can understand how someone who has a long-held belief that they are descended from a particular person might be upset to learn that isn't true. I don't think that should stop us from using genetics to further genealogical research. I think it should make us more sensitive to how we handle information that someone else might find disconcerting or hurtful.

I'm glad to see someone is actually doing a study on how genetic knowledge might affect people. In the future we can make decisions based on a real understanding of how people react instead of using anecdotal information on how a few people have reacted.

1. Carey Goldberg, “Growing Up Genomic: What Happens When You Know All A Baby’s Genes?,” wbur’s Common Health, posted 4 September 2013 (http://commonhealth.wbur.org/2013/09/genome-babies-research?utm_source=cc&utm_medium=email&utm_campaign=nwsltr-13-09-07 : accessed 11 September 2013).

2. Ibid.

To cite this blog post:
Debbie Parker Wayne, 'Entering the "Growing Up Genomic" World,' Deb's Delvings Blog, posted 11 September 2013 (http://debsdelvings.blogspot.com/ : accessed [date]).

© 2013, Debbie Parker Wayne, CG, CGL, All Rights Reserved

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