Today diary is a little depressing. It was not the intention when I started writing, As computer technology continues its expansion into our healthcare system and personal care choices our privacy continues to decrease.

Genetic DNA Testing Privacy
Public DNA tests are becoming more accessible to law enforcement.

It’s just that there’s major news on the GEDmatch front, and it ought not wait to be reported: the third-party tools site GEDmatch — the one in the forefront of the controversy over the use of genealogical databases by law enforcement — has been acquired by a forensic genomics firm that serves the law enforcement community.
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The sale of the database shouldn’t come as a surprise. GEDmatch has been at the center of controversy since May of 2018 when it was disclosed that its database had been used by police to identify a suspect in the Golden State Killer case in California. Its efforts to minimize the damage in user confidence through multiple changes in the terms of service — even to the point of making users specifically opt in to police access to their data — didn’t do much to assuage user privacy concerns, and the issuance of a search warrant by a Florida court last month impacting site users who hadn’t opted in to the use of their data for criminal investigations didn’t help either.

And the sale of the database to a firm serving law enforcement shouldn’t come as a surprise, either, in light of the siteowners’ strong public position in favor of police access to their users’ data.

Medical Record Privacy
Google Ascension Partnership Fuels Overdue HIPAA Privacy Debate

December 02, 2019 - The Wall Street Journal reported in November that one of the largest US health systems, Ascension, had partnered with Google on several patient care initiatives, which inadvertently fueled a debate on just what the HIPAA privacy regulation means in the digital age.

The WSJ report alleged the “Project Nightingale” would allow Google to amass the health records of Ascension patients from across 21 states without consent from the individuals. Other reports have stressed the partnership is in direct violation of HIPAA.

However, under HIPAA, all covered entities are permitted to share data with their business partners, as long as the information is used to carry out the provider’s healthcare functions. The business associate is also barred from using the data for “the business associate’s independent use or purposes.”
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The Need for Federal Privacy Law or Improved HIPAA

“Actually, HIPAA has been lacking. We have to comes to terms that addressing information privacy in the healthcare sector has not worked,” Holtzman said. “Health data, consumer data, and personally identifiable information: the old limits do not apply because information is processed over industry sectors—without effort.”

“It's not effective to have rules that only apply to one sector,” he added.

As result, the industry is seeing a much larger discussion on the need for some type of holistic or universal set of privacy and data protection standards. Holtzman explained the argument now is how will companies be limited in their data collection and how will laws be applied.

States and Congress have continued to fuel privacy legislation debates, with states taking a larger role given the lack of a national privacy legislation. California has one of the strictest privacy laws, but New York has also enacted fierce privacy regulations to better protect consumer privacy.

“In the near term, what we see is an effort from the Department of Health and Human Services to loosen up HIPAA to make it easier for the industry to access and disclose treatment information for purposes not directly tied to the treatment or healthcare of that individual and to expand the definition of healthcare operations and remove the minimum necessary standards,” Holtzman said.

“You see the tension here between consumer expectations and where HHS is going,” he added.

Wearables and Healthcare Apps
Many healthcare apps used to monitor physical functions or allow individuals to load health information are not covered by HIPPA.

Individuals who use healthcare apps such as fitness trackers, weight loss, wellness, exercise, etc., BEWARE!A couple of recent developments have highlighted the fact that most apps are not subject to HIPAA, which means that with broadly-worded privacy policy these healthcare apps can and do readily share healthcare and other data collected by the apps with third parties, including marketing and analytics companies, such as Google and Facebook. Some apps are sharing sensitive healthcare data even without a privacy policy.

The first eye-opening development was a study published in the journal JAMA Network Open (JAMA Study)reported that a number of healthcare apps marketed to people who wanted to stop smoking or who had depression were providing user data, including user health/medical information to third party advertisers and analytics companies such as Facebook.

Healthcare has grown to nearly 18% if of the US economy. It might be justifiable if our population was living longer lives or had fewer health issues. Instead it appears to be a wealth extraction business model similar to mining minerals for profit.