January 8, 2009

Genetics: is direct to consumer genome scanning ethical on children?

Dr. Hsien-Hsien Lei recently posted Testing Children for Sporting Ability Genes on the Eye on DNA blog, discussing how parents might push too much their children in doing something...

With genetic test results in hand, parents may feel tempted to wave it in the child’s face and say, “But you can’t give up! Your destiny is here. You have two copies of the ACTN3 gene (note 1). You were born to be a track and field star.”
note 1: sprinters and power athletes are three times as likely to have this gene... (image)

What I personally think is that direct-to-consumer genetic testing performed on children is profoundly unethical. Genetic information is very sensitive and private data, that a person might want to know or not and share or not with other people. Performing on a child a genetic test - that is not intended to be used to diagnose a treatable or curable disease - in my opinion simply violates his right to decide - as an adult - whether to obtain or not such information and whether to share it or not with his family or anyone else.

Of at least five companies currently offering such genetic services, only two refuse to process samples originating from minors. 23andMe and deCODE, maybe the most famous ones, have no restrictions (see reference for detailed accounts on their policies).

In 1997 the Advisory Committee on Genetic Testing (UK) had already stated: genetic testing supplied direct to the public should not be supplied to those under age 16 or to those unable to make a competent decision regarding testing.

More than 10 years have passed but this seems still an open ethical issue.

Reference paper: Ethics Watch: Direct-to-consumer genome scanning services. Also for children?; Nature Reviews Genetics 10, 8 - 8 (01 Jan 2009) - pubmed link.


  1. Thanks for the link and thoughts, Alberto. Another concern I have when it comes to children is our ability to infer their genotype when parents get testing. Something parents should twice about before going forward.

    PS I can't seem to figure out how to post a comment here without going through another blogging service...??

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