I went to Google Health last night and completed my profile and then I looked for the link to make it public. It wasn't there. So I twittered that I didn't understand why I couldn't make my personal health record public. People thought I was joking, so I twittered back that I was serious. Then I shut down, put Josh to bed, and called the day quits.
When I woke up this morning I saw quite a few replies on twitter with reasons I wouldn't want to make my personal health record public. Here are some of them.
@fredwilson Isn't that against HIPAA? I agree w/open source & transparency but I think health care draws the line re: privacy
@fredwilson As a rich guy who can afford whatever insurance you like, nothing at all. Folks middle class down to lower class can get royally screwed.
@fredwilson posts such huge returns that LP's would forgive him even if he had a fatal disease that would prevent living out a funds 10yr
@fredwilson see Gattica (circa 1997) for what you could potentially lose by making your medical record public.
@fredwilson absolutely Fred...98% of the people have no reason to be up tight about this stuff
@fredwilson Want to stream your DNA sequencing, eh?
@fredwilson But what if your public medical record indicated a condition which would make insurance companies not want to touch you?
OK. There are some damn good reasons why you wouldn't want to share your personal medical record and many of them have to do with insurance and "hiding" conditions from the insurance companies that would make you uninsurable. Well I personally find the whole idea of hiding medical conditions from anyone (investors, loved ones, insurance companies) problematic.
Wouldn't we all be better off with an insurance system that wasn't able to discriminate between people based on pre-existing conditions? Wouldn't we be better off if we came together to insure everyone? Wouldn't we be better off if we knew everyone's medical conditions and what treatments worked and what did not? Wouldn't we be better off if we could search for others with the same conditions to share our experiences?
James argues that the lessons of open source and transparency just don't extend to health care. I am not so sure. And I would like a share link on my google health record. I am not saying it should be required. I get that not everyone wants to share stuff like this. But I do.
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I would like the OPTION to share my info. as well. However, there are other discrimination and stigma barriers that many may consider such as HIV, STDs, psychiatric records, alcohol and substance abuse records, to name a few.
GINA just passed. At least there is some protection, though we've got a long way to go.
1. President Bush Signs Genetic Information Nondiscrimination Act
With President Bush’s signing of H.R. 493, the Genetic Information Nondiscrimination Act of 2008 (GINA), one of AHIMA’s long-time policy goals is now complete. President Bush said on Wednesday in a press release, “I want to thank the members of Congress who've joined us as I sign the Genetic Information Nondiscrimination Act, a piece of legislation which prohibits health insurers and employers from discriminating on the basis of genetic information. In other words, it protects our citizens from having genetic information misused, and this bill does so without undermining the basic premise of the insurance industry.”
AHIMA is excited about GINA’s progress and thanks you for your strong support through the years for this important legislation. AHIMA released an updated position statement on genetic nondiscrimination in 2007. To read more about Bush’s comments on GINA, click here.
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