Know Thy Self — and Thy Genome?

By on March 7th, 2013 in Privacy & Security, Societal Impact

  1. The March 2013 Issue of IEEE Spectrum has an article on the technology and experience of having your genome analysed.  This is technology with significant social implications.

There are places where you  can get a partial genome evaluation such as 23andMe. These are fairly cheap ($99 ball park) and target a modest number (500,000 or so) of the 3 Billion base pairs, and some evaluation of mitochondrial DNA as well. The evaluation identifies 200+ health traits, and also your family tree as presented in Y Chromosomes and the mitochondrial DNA. But this is the tip of the proverbial iceberg.

The evaluation done for Eliza Strickland (Spectrum Associate Editor) was testing one of the new technologies that will eventually provide an analysis of your full genome, with a target price tag of $1000. Or as the article more accurately states, $1000 for the test, $100,000 for the analysis.  Eliza’s test results were focused strictly on the exome (30 million base pairs), aka the gene sections.  Significant control and epigenetic considerations were not included. For example, the control over blue eyes is not in your genes but in the “Junk DNA” that represents the vast bulk of your genome. She was not given “raw” data, but a carefully analysed and reviewed report on a subset.   All of which reflects a division of “opinion” on how DNA evaluation results should be presented.  So here are some of the nasty questions … and I encourage readers to provide additional questions, and also insight on how different countries, cultures, etc. are responding to the rapidly emerging field.

  • Who owns/controls the results?  The individual or the medical  consultants or ???
  • And who has access?  — often insurance funded (or even related) results are shared (with your ‘standing’ permission) with your insurance company.
    (In the US, the GINA law provides some protection against insurance companies and employers discriminating based on DNA information– but not life insurance, or long term care insurance)  Often in applying for insurance you are asked to disclose medical conditions — does this include information from your DNA analysis?
  • Who can run these tests?  Can I take a sample off the cup you left behind at a restaurant, have it analyzed and use the results? This was done by the LA Police seeking a serial killer (via close relative DNA analysis.)
  • You can pursue some personal research on your results via the National Institute of Health.— but what if you surface a (currently) incurable disease?  And of course it will be a probability — say 60% or 20%?
  • It’s not all about you! — you share genes with parents, children and siblings. What you find out about yourself will have some relation to these relations.
  • There are significant potential benefits — 
    • Preventative action — Diet, treatment — is possible
    • Personalized treatment — Doctors can use this information to avoid medications that won’t help in your situation, or might cause other problems
    • Data mining can take your information and condition, associate it with thousands of others, and identify new genetic factors.

Long term it is hard to imagine that we won’t be carrying (embedded?) a memory chip with our Genome information that provides unique identity, information for all medical care situations, and so forth. In reality, we already carry this in every cell in our body and every cell we leave behind.

What concerns/opportunities does this raise in your mind?
What is your country/culture saying about this?