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Experts urge dose of transparency as medical data traded to Pfizer for vaccines

Privacy activists ask if pharma firm is truly only getting publicly available information, decry lack of transparency and fear what will happen if records are de-anonymized

Shoshanna Solomon is The Times of Israel's Startups and Business reporter

An Israeli man receives a COVID-19 vaccine in Jerusalem, on January 4, 2021. (Olivier Fitoussi/Flash90)
An Israeli man receives a COVID-19 vaccine in Jerusalem, on January 4, 2021. (Olivier Fitoussi/Flash90)

Israelis are asking what kind of medical data has been promised to US-based pharmaceutical giant Pfizer in return for the millions of additional doses of the vaccine that are being rushed to Israel.

Prime Minister Benjamin Netanyahu announced Thursday that Pfizer had agreed to send millions more doses to Israel, which will serve as a “model country” for the pharmaceutical giant, offering in return statistical data on the vaccine’s effectiveness. He said the huge influx of vaccine doses would allow Israel to be the first country in the world to get out of the coronavirus crisis.

But the Health Ministry and other government officials have offered only vague answers regarding what kind of information Pfizer will be getting for the doses, compounding concerns over the lack of transparency from the government.

“The prime minister must publish immediately what was written in the agreement with Pfizer,” said Tehilla Shwartz Altshuler, a senior fellow at the Israel Democracy Institute, in a phone interview with The Times of Israel Sunday.

The data-sharing with Pfizer was reportedly a tradeoff for the company’s willingness to sell so many vaccines to Israel ahead of other countries. Israel has a highly digitized health system that operates via four national clinic networks.

Prime Minister Benjamin Netanyahu receives his second shot of Pfizer-BioNTech’s coronavirus vaccine at Sheba Medical Center in Ramat Gan on January 9, 2021. (Amos Ben-Gershom/GPO)

Sharon Alroy-Preis, the Health Ministry’s acting head of public health, said the pharmaceutical giant will receive only information that is publicly shared.

“All the information we’ll give to Pfizer is information that we make available to the public,” Alroy-Preis told Channel 12 news on Friday. “How many cases, how many serious cases, how many fatalities, how many vaccinated.”

If the data provided to Pfizer is indeed just aggregated data about age groups and population clusters that the ministry already makes provides to the public, it is not clear what the huge value of this data would be to Pfizer, Shwartz Altshuler said.

“They can get to this data by themselves; they don’t need to have an agreement to reach it, because if I have access to this data, they can also have it,” she said.

Instead, Shwartz Altshuler, said she had a “strong feeling” that a “different kind of data” has been promised to the US pharma giant: personal data rendered anonymized  — that is citizens’ medical files from which names, addresses and ID numbers are removed.

Dr. Tehilla Shwartz Altshuler, a research fellow at the Israel Democracy Institute. (Courtesy)

This data would have “your blood type, your medical history, maybe you were hospitalized, maybe you went through an abortion, maybe you have mental illness — all your medical records,” lacking only the identifying details, she said.

The problem is that technology today is so advanced that research has shown that even data that has been rendered anonymous can be “de-anonymized,” Shwartz Altshuler said, calling it a “huge risk.”

Israel has medical records of close to 9 million people collected over the past 20 years, which government officials have touted as the second-largest digital database in the world. This gives the nation a global competitive advantage because it started digitizing its patient data years ago, and because Israel has a small and efficient health system and a strong research and development infrastructure.

The Israeli government in 2018 approved a National Digital Health plan, which, despite mounting privacy concerns, plans to create a digital database of the medical files of some 9 million residents and make them available to researchers and enterprises.

But that data is not for Netanyahu to give away as if it were his personal asset, Shwartz Altshuler contended.

“Bibi feels that my health data belongs to him,” she added, referring to Netanyahu by nickname. “If you give someone else or give away my medical records — which are the most sensitive kind of data that someone can know about me — you need my permission. Why didn’t you ask for my permission?”

Treating this personal data as if it belongs to the government is “not ethically, not legally and not morally (right).”

Israeli teachers receive a Covid-19 vaccine, at the Shamir Medical Center in Be’er Ya’akov, on December 30, 2020.(Avi Dishi/Flash90)

She outlined a potential scenario in which a match-making app compiled the de-anonymized data and allowed users to see the family medical history of potential mates.

“It is going to be harmful for us. We are the ones who actually take the risk; it is not the government who takes the risk here. So, someone needs to consult with us, or at least get our consent,” she said.

Shwartz Altshuler’s concerns have been voiced by others as well.

“I don’t know what they gave and what they will give, but it’s clear there needs to be total transparency here,” a former senior health official was quoted telling the Calcalist financial daily Sunday, calling the decision “outrageous.”

Michael Birnhack, associate dean of Tel Aviv University’s law school and a privacy activist, wrote on Twitter that while Israelis were getting a good deal, they should have been asked before their data was essentially sold for vaccines.

“Medical data is private and could touch on the roots of our identity. Using this data without our permission ignores us, does not take us into account, treats us as objects, not people,” he tweeted, noting that data privacy laws in Israel had not been updated for over a decade.

“Also, using data without permission could bolster vaccine skepticism,” he added.

Shwartz Altshuler also contended that while the speedy vaccine delivery of the vaccine may well be worth the price of handing over the data, the public should have been given the choice.

“If I weighed the two sides of the equation: whether to get the vaccinations early or give the medical data — I don’t know what I would have done,” she said. But “some kind of public discussion is warranted. It cannot be done without any transparency. ”

She also suggested that if indeed it were personal data that was being shared, not just aggregate data, there should have been safeguards — and maybe even a quid pro quo — written into the deal: Pfizer’s use of the data should be limited to solely studying the effects of the COVID-19 vaccine; it should have been made clear what measures the pharma company will have to take to keep the data secure; and any medical insight it gleaned should ideally be shared with the citizenry whose data provided that insight.

People receive a vaccine at Clalit Covid-19 vaccination center in Jerusalem, on December 28, 2020. (Yonatan Sindel/Flash90)

In a statement, Pfizer said it “will not receive any identifiable individual health information – the ministry of health will only share aggregated epidemiological data.”

The Prime Minister’s Office declined to comment.

“Israel is not giving Pfizer any personal information about any Israeli citizen, only general statistics. We maintain the complete privacy of all Israeli citizens,” the Health Ministry said in a statement.

According to official Health Ministry data, more than 70% of those aged 60 and over have now been vaccinated in Israel. The total number of Israelis inoculated stands at around 1.7 million, giving Israel by far the highest per capita vaccination rate in the world.

The country started administering second doses of the vaccine on Saturday night, three weeks after the program kicked off.

Netanyahu has said he hopes to have the country largely immunized by late March.

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