DNA information, "incoming!"

Today's WSJ has an article on technology that can map the complete (30 million base pair) human genome for $1000 in about 24 hours.  Needless to say this is an important milestone in life-sciences bio-tech driven by computer and electronics technology, and a demonstration that high tech can potentially contribute more to the future quality of life than many other fields. So, what can we do with a personal full genome, and is it a "must do" lab test?
The article focuses on personalized medications, ones that target not just diabetics but diabetics that have your particular gene variation(s).  And of course some known diseases are genetically based such that early detection can avoid the disease entirely.
Your genome would fit easily on a smart card, circa 8Mb depending on the encoding and ability to focus on differences from a reference genome. The $1000 cost seems expensive until you realize it is a once in a life time test, one essential to obtaining the right medications, and also in establishing effective health maintenance. So I suspect it will be a "must do" activity, one probably initiated pre-natal or at birth.  The result is a significant amount of information about you.
The GINA law took effect in the US in 2009. This prohibits insurance companies mandating DNA testing, the use of DNA testing to deny insurance or alter rates, and the use of DNA testing in employment decisions.  But that was then, this is now.  What is different is the emergence of DNA specific medication and treatment, without testing these are not available -- so while the insurance company may not be able to mandate the testing, it will be done and the treatment programs will disclose the results to insurers in any case (although almost every medical release form includes sharing lab results with insurers who have a 'right' to make sure the treatment is relevant to known conditions, so it is likely your insurance company will know the results anyway.)
It is easy to envision government mandated testing in various situations.  Join the military, go to jail, join medicare, etc.  Or, just like the policy of documenting baby foot prints and blood types, capturing the data at birth.  At what point will 50% of the US population (or any other given jurisdiction) have their genome on record, and how public will that record be?
Consider that first date. It could be possible to collect a bit of DNA from hair, drinking cups, etc. Information  that is "left" in public, just as it is possible (and legal) to take your picture or record your activities if you are in  public today. So now you can check out your prospective friend's background in new and diverse ways.
What will be 'discover-able' by legal process? Already we have cases where the DNA of the father has been used to identify the son in a felony case, other situations like this are bound to arise.
There are organizations, including National Geographic, that will run DNA tests that help you identify your family's roots. For profit organizations offer a variety of services with differing numbers of markers, and looking at maternal, paternal or both lines. Will they limit their analysis to just 44 markers if it is just as easy to  test thousands?  What records do they keep and who has access to these, including with a court order or subpoena (even HIPPA allows for health record access in these situations.) Presumably the "National Security Letter" would provide Federal government access to both health and other records without court order and without any notification of the person who's records have been obtained.
There is a lot of information in them-thar genes.  We can deliver just the right medication or avoid that horrific disease. We can identify your parents, and perhaps a few generations explicitly and even more as a group. We can tie you to specific places and times where samples are taken, use this to arrest you, or your close relatives. While it is not "permitted" to affect hiring or eligibility for insurance, it is unclear that such legislation can continue to apply as analysis becomes more complete, pervasive, available, inexpensive, etc.  Can an interviewer refuse to hire you if they smell alcohol or smoke on your breath? How would you know, and if they have more sensitive 'noses' available, the range of detection can increase.  The boundaries are likely to be confused at best, or even deliberately. These entities have a for-profit incentive to discriminate against risk, and will generally seek to do it legally. However this is an area where the legislative environment and court interpretations cannot expect to keep up with technology. This is a concept explored in part by the 1997 movie Gattica, which is an interesting example of predictive fiction.

1 comment:

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