A Question of Individual Rights
The rise of the coronavirus issued in a new era of division in the world, where a discussion of “the greater good” has sparked tension in the political and scientific fields as well as among the general population. The right to privacy, which has been a point of heated discussion since its inception, is being brought into question as Israel strikes a deal with Pfizer to exchange Covid-19 vaccines for medical data.
The Ambiguity of “Research” as a Term
Ziv Ofek, the founder of dbMotion, an integrative measure for medical entities who need to share information and data in order to come to various findings, has understandably been a voice in the matter of this agreement. While Israel claims that they will only be sharing anonymous statistical information with Pfizer, Ofek comments that research is not conducted on statistics alone, but that additional information is necessary. This especially makes sense in the case of a mutating virus that appears to affect individuals in all manner of ways.
What information, then, is being gathered by Pfizer? Or more importantly, what information is Pfizer permitted to gather?
The Importance of Semantics
The idea of information being innocuous simply because it is not on a “patient level” is challenged by reports of such “scrubbed” data that is still able to be used to trace back to individual patients. As an example, HIV statistics and de-identified information was still traceable back to those who tested positive for HIV. Such information could be made accessible in this way to insurance providers, employers, or any other party who might stand to benefit from or strategically utilize such information.
Whatever claim Pfizer might make about the information they intend to collect or mine does not negate the terms laid out in their contract which comes with an extensive list of definitions for otherwise self-explanatory items which affect the reading of the agreement.
“Identifiable Health Information” as defined in the contract is “health information, as such term is defined in the Israeli Patient’s Rights Law, which contains details that identify an individual without cross referring to additional information, or health information which does not contain details that identify an individual but that may result in the identification of an individual by either using reasonable means or other information which is available to the general public.”
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The latter half of this definition is where the money is. As long as such information has details identifying individuals removed, so that they cannot be identified without cross-reference, it is not considered identifiable health information. This means that health information that can be traced back to an individual by using publicly accessible information but is scrubbed initially for immediately identifying details can still be considered de-identified, and therefore safe to use in data exchange.
This opens up a very large and attractive pool of data and information for third parties to work through to identify individuals as well as potentially sell this information without faulting Pfizer for such potential.
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The contract’s terms on their own raise eyebrows to the seemingly harmless and helpful efforts of Pfizer, including the rights of either party to correct or add to findings as a result of mass vaccinations. As politics and Covid-19 have become grossly intertwined, this poses implications of possible withholding or altering of data for political purposes by parties who could use the release of this information to the advantage of political campaigns or policy.
How Will Results Justify the Risk?