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Genetics: Now that we finally have some protection…

by John Moore | May 02, 2008

The Senate unanimously passed their version of a Genetic Information Non-Discrimination Act this week while the House had one hold-out when they voted to pass this legislation yesterday.  President Bush says he’ll sign the legislation into law once it arrives on his desk. What I can’t quite figure out though is with such near unanimous approval, why did it take the legislature 13 years to finally pass this law and secondly, now that they have passed it, why the 18 month wait for it to actually become law?  Maybe it has something to do with reconciliation with the numerous states who are way ahead of the Feds on this one, with some 32 states already having legislation in place to protect employees.

Well, I’ll leave that for others to figure out. I’ll also leave it to others much more knowledgeable than I to address the validity of all those 1500+ genetic tests out in the market today and the risks that a consumer may face should they go direct and order their own genetic test without the advice and consultation of a physician.

What I wanted to circle in on is the issue of how a consumer, who takes a genetic test, manages the data that they receive that is associated with the test?  And as an extension of that, if the consumer takes a number of different tests over their lifetime, (after all, new genetic discoveries are being made every day, many with implications for future genetic tests and we each have at least six or so genetic mutations that make us vulnerable) how will that data become a part of their health record?

Well, of course in an ideal world it would be in their PHR – at least that seems quite logical.

Unfortunately, I have yet to find a PHR platform in the market that provides such capabilities. I have brought up the issue on several occasions when speaking to PHR vendors and even brought it up during one of the sessions last week at WHCC.  Common response is either: Yes we are thinking about it but are awaiting market demand (i.e., someone to actually ask for it and be willing to pay to have us build it), or Hmmm, too many issues there that we are not in a rush to tackle right now, though we will follow it closely.

Don’t think it would be all that difficult to do as the data from such tests are digital, well-defined and well-structured. What may prove challenging is insuring that genetic data from multiple tests and multiple sources can all be collated to create an individual’s comprehensive genetic profile. It will also be necessary for the PHR vendor to provide discrete data tagging of genetic tests that allow the consumer to share or sequester test results as most will not be comfortable with having all genetic information easily accessible, even by a physician.

Yes, it is out there on the proverbial bleeding edge, but with the passage of this legislation, the ever growing number of genetic tests coming to market and being performed, whether at home or in a doctor’s office, it is clearly something that will only grow, no if, ands, or buts.  Now, do I hear any takers in the PHR community willing to step up to the plate and beginning to actually get ahead of the pack and address this issue?

Who knows, it may just provide you with a unique message to take to market that goes beyond the commodity-type messaging and positioning that is all too prevalent in this industry today.

3 responses to “Genetics: Now that we finally have some protection…”

  1. […] on this one, with some 32 states already having legislation in place to protect employees.” Aricle John Moore, Chilmark Research, 2 May […]

  2. MG says:

    Genetic testing is a classic red herring right now in healthcare. Out of pocket costs are prohibitively expensive (still way over $1000 to replicate a person’s entire genome) and diagnosis value is limited with certain exceptions.

    See interesting post:


  3. John says:

    Actually, genetic tests pricing is all over the map. You can get simple tests for as little as ~$100. to a full, blown out personal genome of your own for tens of thousands of dollars – all depends on what you want. What is certain though, is that these tools/tests will increasingly become a part of the preventive medicine arsenal and we need to start preparing for that now.

    And thanks for the link!

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