NIH data harvesting and our privacy

[Ebby]

I think this needs addressing and I have not seen it brought up on the community yet. 3rd party integration seems like the best fit of the options as there is no general/news section.

"The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday. [...] claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said." - CBS News Article

This has raised the hair in my neck; It is trivial to de-anonymize data these days especially with a massive database as mentioned. I can't help but assume worst case scenarios in this day and age as a loss of data control has perpetual consequences.

My major concerns are:

• Does this apply to Fitbit in any way?
• Has Fitbit/Google data been volunteered/sold to government, such as a request of "data from smartwatches and fitness trackers," without subpoena?
• What data is/will be available to NIH?
• When will the transfer likely take place, or has it already?
• How can we opt out or will Fitbit/Google even allow us the option?

I hope I am overreacting, but I was saddened by the sale of Fitbit to Google and held out hope from Google's press statement championing data privacy and control commitments to ease the Fitbit community's fears.

"We understand this is a big responsibility and we work hard to protect your information, put you in control and give you transparency about your data. Similar to our other products, with wearables, we will be transparent about the data we collect and why. We will never sell personal information to anyone. " - Agreement with fitbit 

Thank you for your thoughtful response, Fitbit team.

[Nonyabidness]

I also do not want NIH or Google getting my data from my Fitbit. I don’t trust Google since they gave user email information to the Chinese government previously. I’ve been an owner of Fitbit devices for a while and enjoy the product but will discontinue use if I have to give my data to Google. Also can we fill out an opt out form that we do not consent to our Fitbit data to be shared with anyone for any reason? Or do I just need to request my data be deleted?

[LZeeW]

@Ebby   This is a user to user help site and you might not get the 'official' answers you seek here.  Here is a link to a Help article: FAQs on Privacy:Fitbit  I expanded the section on data that might be shared with third parties.  Here is the Fitbit Privacy Policy.  I saw the comments about smartwatches, too.

I will flag this thread to get a moderator's attention.

[sandykmac]

I, too am concerned. I will disconnect my Fitbit and delete my account but you already have my data so how can I get assurance that you will defy any demands from the government for my data. I do not want to become part of the registry. It reminds me too much of what the Nazi Government did. 

[Nonyabidness]

Don’t switch to the Google servers when the window pops up. It says all your data will be lost if you don’t switch. I downloaded all my data for my own health records and will be deleting my account unless RFK’s plans get stopped by the courts.