According to AP, some professors are about to post medical records and “the DNA sequence of about one-fifth of their genes on the Web.” The goal is stimulate the ability to have less expensive and easier ways to have personal genome sequencing. The project is called appropriately enough, Personal Genome Project. Professor George Church of Harvard is the founder and principal investigator. The project wants to have 100,000 participants and has passed Harvard’s ethical review board.
A choice quote from the article
I believe that there’s a great advantage to each of us knowing our sequences, but it is also to me inconceivable that absolute genetic privacy will be maintained,” said Stanley Lapidus, chairman and CEO of Helicos BioSciences Corp.
may be accurate. The whole thing may be a precursor to a Gattaca world (possibly the best underrated film of 1997) but the article suggests that the Genetic Information Nondiscrimination Act will help protect us from the possible downsides of such information being more public. Insofar as it really prevents descrimination by employers and insurers based on genetic information, it may. Indeed, one might argue that this information requires national health care because no private company would honestly be able to provide health care and not discriminate once this information is available.
Beyond private companies, however, I wonder whether we as individuals will be able to make decisions without considering potential health issues or predispositions. Not that such concerns should stop the research. Rather it seems that a sort of genetic dowry could be part of the mating process. It arguably happens already but it could happen with more precision. The film has a great moment when Ethan Hawke’s character refuses to test Uma Thurman’s hair and see her genetic code. Of course that may be because he knew he was flawed and did not pass muster, or because the message of the film was that we are more than our genetic code.
This post partially preempts a question that I’ve been meaning to ask here, so I’ll ask it in the comments and see if it provokes some discussion. (Deven, you’re welcome to appropriate it if you like and add it to the Co-Op version, where it might get more visibility).
Who owns your health data? Your historical blood pressure statistics, your chloresterol readings and weight, and so on.
Partly, this is a grand philosophical and normative question. I’m not asking about that.
More importantly, it is a powerful and important practical question. Data portability projects are underway all over the country, and institutions at several levels are salivating over the prospects of owning this stuff. They are the usual suspects — hospitals and physicians, insurance carriers.
In case of ambiguity, form contracts coupled to HIPAA notices will cover their butts vis-a-vis individuals.
Is that the right outcome? This stuff is just the basis for so-called bargains? We might not like the rhetorical presumption of “ownership,” but we’re stuck with some frame that presumes control. If control isn’t allocated to individuals, then it will be appropriated by other institutions, and that may be a bad thing. If we want to vest individual patients with control, how do we get from where we are now (state of acute uncertainty, capable of being exploited by large institutions), to that position? Again, I’m not interested in distributive justice arguments. I’m interested in pragmatics. How is this going to work?
Well, here’s a squib from Greg Vetter’s case study up on ssrn:
“The case study involves software to manage health information for hospitals or physician groups in the form of the electronic medical record, or EMR. Proprietary software venders supply most of the products for this software market. Recently, the U.S. government undertook experimental steps to promote a FOSS package for EMR, raising the question as to whether the EMR software market is amenable to FOSS. This Article describes various factors that might signal a FOSS disfavoring market, including low technical aptitude among users, differences among users in their work flow and software interface needs, users with dispassionate computing agendas, and entrenched proprietary competitors in an area supporting minimal complementary goods or services. FOSS, however, might be able to overcome these impedances in a particular software market if its unique motivational mix is strong enough.”
Mark Hall is also working on this issue.
Some patients now keep exhaustive files, and scan information in (0r request CD’s or DVD’s from hospital records staff).
I’m glad Deven blogged the article–I found it pretty frightening. To me, let’s get some guaranteed backstop of care first. I’ll bet most of these pioneers (like Pinker, Dyson, etc.) will never have to worry about not having insurance, since they’re wealthy enough to pay for it all on their own.
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