Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, August 2, 2022

Sign Here

We sign forms.  We agree to things in order to get treatments, both approved and experimental.  It's exactly the same thing as signing forms in order to rent a car.  There is a lot of fine print and there are things in that fine print that we don't particularly like (if we have the time and eyesight to read it), but what can you do?  The form is a barrier between you and what you need.  You sign to get past that barrier.  You have no power in the deal when you are at the car rental counter.

Your health data, especially when aggregated with the data of lots of other people, are of significant value to medical researchers.  Imagine how much Company B would like to have data on people taking Company A's product.  The blood tests and clinical data observations over time could be priceless.

Let's go back to those forms you sign.  People with ALS are encouraged more and more to get genetic
testing and counseling.  You sign forms to do that, and the company provides your data to you.  Great.  But what do those forms say about what happens next to your data?

People with ALS sign forms to receive treatment and to participate in research.  Wonderful. But what do those forms say about what happens next to your data?

Most people with ALS want their data shared broadly, and that certainly happens in some situations.  In other situations, their data become a commodity.  If data are eventually sold to the highest bidder, is that not having the opposite result of what a person with ALS intended?

We need to talk more about this problem now so that we can influence what is on those forms. People with ALS can use their power to make sure that they are not voiceless pawns in someone else's business model.

And we need to talk more about the role of agencies like NIH to help us with solutions to neutralize this problem.  If we had a robust NIH natural history that was a "come one, come all" destination for people with ALS to contribute their data, we could be assured of open and equitable access to data that would advance the science rather than advance a few investors' bank accounts.

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