Privacy of Kids' Genetic Testing Site for Athletic Ability

News sites and genetic blogs have been abuzz over the past few days with the ATLAS Sports Genetics' release of a genetic test to determine kids' athletic ability. ATLAS isn't the first to offer the test, but the company's site trumpets:

Finding any great Olympic champion normally takes years to determine.
What if we knew a part of the answer when we were born?

There are a number of ethical questions raised by that statement and the implications of these tests, which many others have been writing about (e.g., here and here). However, I'd like to raise some concerns about the company's use of genetic information, its privacy policy, and marketing practices.

While the ATLAS site is aimed at people purchasing tests and not the kids being tested or for providing online access to test results, there are a number of questions that I would want addressed before purchasing kits and providing cheek swabs for my kids.

For example:

  • What happens to genetic information collected? The privacy policy and site insufficiently describe what's done with genetic information collected. Even if the company decides to continue to focus its privacy policy on only the information collected via the site, as opposed to an integrated policy covering online and offline information practices, I wouldn't trust this company with my kids' genetic information without knowing more.
  • To whom does ATLAS outsource testing? Is that third party provider CLIA-certified? What happens to the samples provided (e.g., are they destroyed, stored, deidentified, reused)? Does that third-party lab partner get personal information associated with each test subject?
  • Do the company's current or anticipated marketing and sales activities include the use genetic information in any way? Based on my reading, the policy suggests that information collected is shared with third parties for marketing purposes. To what extent this includes kids' genetic information, testing results, and demographic data is not articulated. The site provides links (under resources) to three external companies/sites. Are these partners and to what extent does ATLAS receive compensation for sharing personal information and/or cross-marketing products to families who have been tested?
  • What choices do I have as a parent when it comes to information about my kids and sharing of any personal or genetic information to partners and service providers? The privacy policy has a link to an "option to opt-out," however, it  doesn't lead to any content in the policy.
  • From a compliance perspective, it isn't clear that the Children's Online Privacy Protection Act currently applies, as the site isn't directed towards kids nor are testing results provided to kids online, at this point. However, the above link takes you to the FTC page on COPPA, which states, "If you operate a general audience Web site or online service, and you have actual knowledge that you are collecting personal information from children under the age of 13, compliance is required, as well." ATLAS' products are segmented according to age groups (ATLAS First, 1 and up; ATLAS Plus, 7 and up). Even if a legal expert confirms that COPPA doesn't apply to ATLAS, the company might consider complying anyway as a way to demonstrate trustworthiness and accountability for ethical and secure handling of personal and genetic information.
  • That said, the company doesn't appear to be in compliance with California's Online Privacy Protection Act, primarily around posting an effective date of the policy and including a process for reviewing and requesting changes to personal information. While these may sound like nits, given above concerns, they further point to a general lack of sophistication around a core issue associated with their business.

A few other items worth mentioning...

The NYT article on ATLAS quotes a number of experts, but one jumped out given his involvement in Geneforum's gene doping forum a few years ago:

Some experts say ACTN3 testing is in its infancy and virtually useless. Dr. Theodore Friedmann, the director of the University of California-San Diego Medical Center’s interdepartmental gene therapy program, called it "an opportunity to sell new versions of snake oil."

"This may or may not be quite that venal, but I would like to see a lot more research done before it is offered to the general public,” he said. "I don't deny that these genes have a role in athletic success, but it’s not that black and white."

Our gene doping forum archive includes links to audio and presentations from the event, including from Dr. Friedmann, Tom Goldman, Sports Correspondent, National Public Radio's Morning Edition, Mari Holden, Silver Medalist, 2000 Olympics, Road Cycling, and Maxwell Mehlman, JD, Director, Law-Medicine Center and Professor of Biomedical Ethics at Case Western Reserve University.

Also, for those of you who are interested, 23andMe has a concise summary of the underlying genetic traits that can be analyzed as part of these tests:

Athletic performance can be influenced by a number of factors, some of which are genetic. Genes determine between 20-80% of the variation in traits like oxygen intake, cardiac performance, and muscle fiber composition. To date, more than 150 genes have been linked to different aspects of physical performance. One of the clearest associations is seen with a gene called ACTN3 that is normally turned on in a type of muscle fiber used for power-based sports. A single SNP can turn this gene off. While this genetic change does not cause any health effects, it may contribute to whether you are a sprinter or a marathoner.

Flickr Credit: Guy Glover, Kids of Steel Triathlon, June 2008
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