The FTC's health data warning shot
The Federal Trade Commission has proposed a settlement with prescription discount site and telehealth provider GoodRx that could lead to enhanced protections for the health data Americans share with websites, mobile apps and myriad other connected devices.
Right now, that data exists in a legal gray area. It’s not covered by HIPAA, the federal law governing the privacy of data held by medical providers. But the FTC has broad power to police “unfair” and “deceptive” practices and, under Chair Lina Khan, is looking to expand them.
The settlement: The FTC order is before a federal court in California, which must sign off on it before it takes effect. But the claim against GoodRx, which alleges the company shared customers’ health data with Google, Facebook and other online advertising platforms and data brokers, reflects how the agency is redefining its authority.
Beyond unfair and deceptive practices, the FTC cited violations of its 2009 health breach notification rule in fining GoodRx $1.5 million and mandating privacy remedies.
GoodRx has agreed to pay the fine and implement the remedies but denies it did anything wrong.
The use of the data breach rule is notable because it was designed to protect health data that might be leaked in a breach but is not covered by HIPAA. However, the rule does not explicitly mention data shared via marketing practices. The rule says any entity not covered by HIPAA that collects personally identifiable health information must inform consumers of a data breach or face enforcement.
Health services and tools like telehealth providers, pharmacies and purveyors of Bluetooth-connected blood pressure cuffs and diet apps — and third parties like Google and Facebook — are watching the FTC actions closely.
What’s next: Since her 2021 Senate confirmation, Khan has pushed the idea that the methods used by marketers and data brokers to collect personal information on websites and internet-connected devices are unfair and often deceptive and subject to FTC scrutiny.
In August, the FTC issued an advance notice of proposed rulemaking asking for public input on whether the commission should write new rules governing commercial surveillance and data security.
The agency has received more than 10,000 comments, and proposed rules could come later this year.
In addition to its case against GoodRx, the agency has brought privacy actions against period tracking app Flo Health and data broker Kochava. Flo Health settled. The Kochava case is in litigation.
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Remember Alpha and Gamma? Turns out early coronavirus variants are circulating among New York state deer, according to a new study published in the Proceedings of the National Academy of Sciences.
Researchers analyzed tissue from deer killed by hunters during the 2020 and 2021 deer-hunting seasons. They detected the virus in just 0.6 percent of deer samples in 2020. In 2021, the virus was present in 21 percent of samples – with genetic sequencing indicating that three variants of concern, Alpha, Gamma and Delta, were present that year.
The study results suggest multiple spillover events from human to deer, as well as subsequent deer-to-deer transmission. It's not clear how the virus is passing from humans to deer, but feeding wildlife and baiting prey could be transmission risk factors.
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Aiming to avoid the failures of the Covid-19 pandemic, the World Health Organization released a draft agreement on Wednesday aimed at bolstering preparedness for the next major disease outbreak.
The draft agreement lays out mechanisms to boost information-sharing among countries and distribute vaccines more equitably.
If member countries agree, the proposal would:
— Require them to allow WHO rapid-response teams access to their territories to assess and support efforts to combat emerging outbreaks
— Establish a system to share pathogen information and ensure that all parties to the deal benefit from the countermeasures developed based on that data
— Mandate that manufacturers of pandemic-related products like tests, vaccines, personal protective equipment and treatments share a fifth of their production in real time with the WHO, which will distribute them to low-income countries
— Demand that countries support temporary waivers of intellectual property rights on vaccines and therapeutics and require manufacturers that have received public funding to waive their rights
— Establish a global compensation system for injuries resulting from vaccines
— Implement and apply international standards for, oversight of and reporting on laboratories and research facilities that carry out “gain-of-function” research aimed at altering the way viruses work
What’s next: Governments will start negotiations on the agreement at a meeting later this month.
Funding for “neglected diseases” — those prevalent in developing countries that need new therapeutics but lack sufficient investment to develop them — continues to drop, according to a new report.
Policy Cures Research, a global health policy and research group based in Australia, says that funding for basic research and product development dropped slightly by 0.2 percent in 2021, continuing a three-year-long trend that has investment down 4 percent from 2018.
The big picture: HIV, tuberculosis and malaria received the largest share of funding, with money for HIV research increasing by nearly 3 percent. Malaria funding decreased by nearly 6 percent. TB remained pretty stable.
The report’s lead author, Paul Barnsley, a senior analyst with the research group, explained that the flat line in 2021 marked cause for concern.
The small pool: Funders of R&D aren’t exactly rushing to push their cash toward neglected diseases.
In fact, funding relies on “more or less the same people who’ve been doing it all along,” said Barnsley. The same top 10 funders provided 88 percent of the global cash for those neglected diseases a decade ago, and they continue to account for at least 85 percent of global funding.
Much of the funding comes from the National Institutes of Health and the Bill & Melinda Gates Foundation.
Shift away from HIV vaccines: R&D aimed at producing a vaccine for HIV dropped by 4.6 percent, but drug-therapy R&D saw a 53 percent increase to a record high of $279 million between 2020 and 2021.
“It seems like there is a systematic move away from vaccine R&D and towards drug R&D. We just don’t know why,” Barnsley said.
Source: https://www.politico.com/