People are saying that open access to everyone's medical records would speed up research, but that's not how well-controlled and well-designed medical research works in practice. For example, if you wanted to study lung cancer causes and treatment efficacy, just mining public data would not be that beneficial. Real studies need controls, detailed patient histories, actual observational lab work (blood tests, etc.), and so on.
What this data would be used in practice? Insurance corporations would use it to identify people at greater risk of diseases and to deny them coverage (or make it difficult to obtain coverage, remove them from coverage, etc.) in order to increase their profit margins.
Now, you could have useful anonymized public databases, for example, imagine if everyone got regular monitoriing of body burden of heavy metals and industrial and agricultural organic chemicals, and that was cross-referenced to their incidence of cancer, liver disease, etc. This could reveal common associations between specific pollutants and various diseases that could then be studied in more detail. Similarly, this could be applied to pharmaceutical products (which sometimes do more harm than good to their users)
Of course, that kind of public health-centric database would open up corporations to liability and cause profit loss, which is why such body-burden assessments of pollutants are not part of your normal medical checkup.
If the data is rigorously anonymized, then it loses all value for the health insurance / advertising sector, who want to exclude high-cost patients from coverage and target individuals with health conditions, respectively.
Do you think Big Tech shareholders (with additional holdings in pharmaceuticals, petrochemical, agribusiness etc.) would be interested in a database of rigorously anonymized patient data intended to discover relationships between things like pesticide exposure and Parkinson's disease, or unpleaseant side effects of currently profitable pharmaceutical products?
I basically don't believe non-degenerate (psued)anonymization is possible, although that complicated af homomorphic encryption stuff makes me a little uncertain.
What this data would be used in practice? Insurance corporations would use it to identify people at greater risk of diseases and to deny them coverage (or make it difficult to obtain coverage, remove them from coverage, etc.) in order to increase their profit margins.
Now, you could have useful anonymized public databases, for example, imagine if everyone got regular monitoriing of body burden of heavy metals and industrial and agricultural organic chemicals, and that was cross-referenced to their incidence of cancer, liver disease, etc. This could reveal common associations between specific pollutants and various diseases that could then be studied in more detail. Similarly, this could be applied to pharmaceutical products (which sometimes do more harm than good to their users)
Of course, that kind of public health-centric database would open up corporations to liability and cause profit loss, which is why such body-burden assessments of pollutants are not part of your normal medical checkup.