The government wants your family health history, but the way they are going about it leaves something to be desired. This Thanksgiving, as many families gather together, the Department of Health and Human Services decided to use the holiday as an opportunity to announce a free software tool to collect family histories. The idea behind this effort was to educate the public about genetic markers for particular diseases (including heart disease, cancer, and diabetes) and to raise the awareness for early screening tools in the hopes of preventing the spread of certain diseases.
As someone who has inherited a pretty lousy gene pool (with cancer on both sides of my family), this tool seems like something the Strom family should have been all over.
It is a notable effort, but somewhat misplaced. My problem with the tool is that it only runs on Windows with .Net framework installed, which is too much software to install on most of my machines and I fear on those of the average person as well. And why should I bother installing any software, especially some fed-based bloatware, at all? Ideally, this stuff should be just Web-based and run inside a browser. Come on, guys, get with the program. Do you really want to encourage more Microsoft monopoly here? Maybe we should have gotten the DOJ rather than HHS to write this particular program.
There are several other efforts besides the federal government at capturing this information. A notable one is REDmedic.com, where for $35 a year you can store this information online on their servers. While I have concerns about the privacy of this information, it is still a better idea than what HHS is trying to do. REDmedic is geared towards a slightly different goal – they want to help emergency room doctors and other personnel figure out your medical history quickly and accurately. Given how hard it was for me to complete the HHS questionnaire when I was doing it in the relative quiet and calm over the holiday weekend, I can't imagine trying to walk someone through even a small part of this in the throes of a medical crisis and under the confusion of your average ER these days.
The more time I spent with the HHS software, though, the madder I got about how misplaced our government's efforts are towards being a partner in my overall wellness care. It has nothing to do with lousy software quality of the program. If the Surgeon General was really so concerned with catching early signs of disease across family lines, he should have spent more energy lobbying the health-care providers to make it easier to cover these diagnostic and very expensive tests for the very same diseases that they are recording in your family profile.
For those of us who have tried to get a jump on our wellness care, we have found a very steep uphill battle to get insurance companies to pick up even a small portion of the tab. It seems as if most insurers go out of their way to do the opposite, and make it as difficult as possible to get these tests.
In the meantime, I hope you all had a wonderful Thanksgiving, if not taking your family medical histories, then at least enjoying being with your family and friends.
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