Dr. Robert Marion on Direct-to-Consumer Genetic Testing

by Dr. Hsien-Hsien Lei
Posted August 26, 2009 in Books About DNA, DNA Testing, Personalities with DNA

My interview with clinical geneticist and author Dr. Robert Marion continues today with his thoughts on direct-to-consumer genetic tests and genome scans.

In the past couple of years, genetic testing companies like 23andMe have begun offering genome scans to the general public. Have you purchased direct-to-consumer genetic tests such as these? Would you recommend it to anyone even for purely recreational reasons? Why or why not?

The age of personal health through genetic testing is clearly upon us, and this is definitely a good thing.  However, genetic information is a powerful tool, and it must be used carefully.  In the past, experiences with presymptomatic testing for Huntington disease and BRCA 1 and BRCA2 mutations have made all of us aware of the potential problems related to providing genetic testing without supplying adequate pre- and post-test genetic counseling.

And this is the heart of the problem with direct-to-consumer genetic testing; without careful explanation, without accompanying genetic counseling to explain their meaning, the results are not only meaningless, they can actually be harmful. 

Traditionally, this has always been a problem with genetic testing: the technology, our ability to perform the testing, has always run way ahead of our ability to deal with the consequences of that testing, educationally, morally and ethically.  If a test is performed, who should have access to the results?  Should employers be allowed to see them?  Should health and life insurance carriers? And who should pay for these tests?  If insurance companies cover the cost, shouldn’t they be allowed to see the results (and make decisions about coverage based on those results)?

Mercifully, the passage of GINA (The Genetic Information Non-Discrimination Act of 2008) has prevented the latter from occurring, but all of this needs to be worked out and rules put in place before testing is provided, not after.

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For those of you who have purchased a direct-to-consumer genetic test, PhD candidate Sudeepa Abeysinghe at Australian National University is recruiting research participants. She says:

My research is being conducted completely independently of any testing company.  It focuses upon the consumer experience, and I do not ask any potentially sensitive questions about specific genetic results. 

The survey can be found on the (secure) Australian National University website at this address:  https://apollo.anu.edu.au/default.asp?pid=3937

Please help out if you can!

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For more on Dr. Robert Marion and his new book, Genetic Rounds:

• Genetic Rounds by Dr. Robert Marion
• Medical Geneticist Dr. Robert Marion on Writing
• Dr. Robert Marion on Preimplantation Genetic Diagnosis
• Dr. Robert Marion on Complex Genetic Diseases

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