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California Bill Would Protect Our Medical Data From Big Tech

There is a race between the tech industry and lawmakers over your medical privacy.

Big Tech is moving as fast as possible to bring its increasingly intrusive devices into people’s homes before policymakers can summon the political will to put in place much-needed consumer protections.

The latest example of such an intrusion, as I reported last week, is that Amazon has received federal approval to equip its Alexa devices with radar sensors capable of “capturing motion in three-dimensional space.”

The idea, according to the company, is to monitor your sleep “with a higher degree of resolution and location accuracy than would otherwise be achievable” using a portable device such as an Apple Watch or Fitbit.

Andrew Guthrie Ferguson, an American University law professor who focuses on privacy issues, told me this unprecedented level of bedroom surveillance is “as frightening as Silicon Valley.”

This is also exactly what California Congressman Ed Chau (D-Arcadia) hopes to curb with a bill that is currently making its way into the state Senate.

Its legislation, AB 1436, would amend California’s Health Information Privacy Act to require that any business collecting and receiving health-related data receive prior written permission from customers.

“These tech companies are looking for all kinds of personal medical information – your heart rate, your blood pressure, your sleep patterns,” Chau told me. “As it is, they are circumventing medical confidentiality laws. “

This is because the existing laws apply to “healthcare providers,” which Amazon, Apple and Google are not, even though they are among the companies most keen to hang on to your medical data. and use them.

Chau, who has been trying to push through variants of AB 1436 for years, originally drafted the latest version of his bill to explicitly designate any company that collects medical information as a healthcare provider.

This simple change would instantly put all of those businesses under existing state and federal medical privacy rules.

Chau told me he had to ditch this provision amid a sharp setback for the tech industry and its friends in Sacramento.

The legislation now focuses on the requirement of explicit acceptance for any collection and transmission of medical information.

Although this is a more modest goal, Chau admitted, “I think the net effect is the same. These companies would need your permission.

He said his bill, if passed, “would place safeguards around these technologies.”

It would be a good thing.

Technologies that affect your well-being have become so ubiquitous that there is a name for the industry: mHealth, as in “mHealth”.

The World Health Organization defines mHealth as “the use of mobile and wireless technologies to support the achievement of health goals”. The National Institutes of Health claim it is “the use of mobile and wireless devices … to improve health outcomes, health services, and health research.”

Grand View Research predicts that the market for these technologies will be worth nearly $ 150 billion by 2028.

Yet there is very little regulatory oversight over how these software and hardware companies operate, or what they do with people’s health information.

Are they going to use it to sell products to people? Will they share the data with insurers, employers, or companies that do background checks? Will this treasure trove of health information be stored in anticipation of future technological advances?

Medical technology is the most glaring example of how Silicon Valley’s relentless commitment to innovation far exceeds the laws and regulatory structure of the country.

Amazon, for example, was once just a bookstore. The company’s wide range of offerings now include an online pharmacy, over-the-counter medications and supplements, and, with its radar upgrade to Alexa, a device that will watch you all night while you sleep – and share this data flow with Amazon.

I asked the company last week for details on how radar technology works and what Amazon will do with that information. Nobody answered.

I asked again this week and also asked for feedback on Chau’s medical data bill. Nobody answered.

Chau, on the other hand, said he had read my column on radar technology and found the idea “scary”.

“The tech industry continues to provide increasingly intrusive technologies to consumers,” he said.

Chau’s bill states that any business offering “a personal health record system” to consumers “shall not knowingly use, disclose or permit the use or disclosure of personal health record information without a signed authorization.” .

“The bill would also prohibit a recipient of personal health record information … from further disclosing their health record information except in accordance with a new authorization,” he said, adding that your medical information could not. not be shared with others at a later date without your say-so.

Chau said it had been an uphill battle to push this bill forward through the Legislature amid intense lobbying from the tech industry to kill it.

“Big Tech is in opposition, big time,” he said.

This is an understatement. The California Chamber of Commerce, speaking on behalf of a dozen leading technology organizations, said Chau’s bill was “too broad” and “would significantly expand” the types of businesses and companies. products subject to state law on medical confidentiality.

This, in turn, would have the effect of “dramatically disrupting the market, availability and cost of daily health products to Californians,” according to the chamber.

For the Apples and Amazons of this world, this is not ideal. For the rest of us, well, a little disruption is just what it takes.

Chau also suspects a broader objective at work among opponents of AB 1436.

He observed that if California passed a law making tech companies responsible for people’s health data, it could prompt Congress to similarly amend the main federal medical privacy law, the Health Insurance Portability and Accountability Act.

Federal law, known as HIPAA, is obsolete obsolete. Amazon was still just a start-up bookseller when the law was enacted in 1996. Apple was on the ropes as sales plummeted. Google won’t appear for two years.

Now each of these companies has microphones and cameras in millions of homes, and each has made it clear that medical technology is a big part of their respective futures.

Chau is not a Luddite. He accepts the importance of medical technology. He just wants to make sure consumers are protected as these powerful, privately controlled capabilities reshape society.

“Technologies like this are invaluable,” Chau said. “But when information like this is collected and transmitted, you have to give people a voice.”

It is not much to ask. Our lawmakers should ignore Big Tech lobbyists and embrace AB 1436.





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