US government is pushing to gain unprecedented access to your medical records – as data protections

You might assume that what you tell a doctor stays between you, your physician and perhaps your insurer. But the reality is more complicated.

The , the federal privacy law that governs health information and is , is narrower than its reputation suggests. It regulates hospitals, physicians, insurers and their business associates, but not the health data you generate everywhere else: not the period-tracking , the you ran about a diagnosis, the DNA you or that counts your heartbeats.

Even the records HIPAA does cover can be shared, sold or handed to the government in .

This gap in protection matters more than ever because the U.S. government is pushing hard to . This is happening even as a growing body of research shows that the safeguard which these efforts to collect data lean on – anonymizing data by removing identifying information to make it difficult to trace back to an individual – is than officials claim.

As a at Indiana University, I study health information privacy and medical data regulation, which includes tracing how sensitive health information moves among clinics, government agencies and law enforcement. As a co-investigator on a federally funded study about opioid prescribing, I rely on health data in my own research. I appreciate its value for science, and I also see the danger of collecting it without meaningful safeguards.

Limits of medical privacy

HIPAA gives you : You can see your health records, demand corrections and expect that a covered provider will not casually disclose your information.

But the law also permits release of some information without your consent. A hospital fully bound by HIPAA may release certain types of records without your authorization and without telling you. There are roughly a . Information about treatment, payment and routine healthcare logistics require no sign-off. Neither does information released for , , , , or the broad catchall of .

The statute is also . In practice, much of your health information can be shared through these many open doors. And once data is sent outside the system covered by HIPAA, the HIPAA limits fall away.

For instance, , which every state now operates, assemble detailed logs of who filled which controlled substance prescription and when. Federal law enforcement can often access these logs with a – an order that doesn’t require a judge’s approval or oversight.

These programs have expanded beyond opioids into a , exposing patients who seek reproductive or gender-affirming healthcare to surveillance far from home.

Health records can flow to many destinations under different rules. A given disclosure might feel more like a violation depending on who decides where it can go and who can then see it.

RFK Jr.’s push to access Americans’ health records

Since the , Health and Human Services Secretary Robert F. Kennedy, Jr. has sought to Americans’ medical records to investigate whether vaccines cause autism. The scientific community has studied this question for decades and has shown .

According to , HHS has been courting – the little-known systems that let hospitals and clinics swap detailed, identifiable patient records – and asking how those records might be used for vaccine research. One proposal floated by state organizations would give HHS data on by 2028. In Nebraska, have flowed to a statewide health information exchange nonprofit that has cooperated with the effort.

Large health datasets . Pooled records can , and that smaller studies miss. Public health has always depended on for collective benefit.

The concern is not that the government should never collect health data. It is that meaningful safeguards with the scale of collection and capabilities of modern data analytics.

In seeking access to Americans’ medical records for a vaccine and autism study, HHS has how many states are involved, what data it collects, who can see it or how it will be protected.

Building a comprehensive repository to chase a inverts the logic of research. Usually a hypothesis justifies the data collected, rather than the reverse.

Collecting identifiable records for tens of millions of people in a single database also creates a , and abuses by current or future administrations with different priorities.

‘Anonymized’ doesn’t protect your health privacy

Officials have that data will be aggregated and stripped of identifiers so .

Decades of computer science research . A study published in Nature in June 2026 sharpened the point, showing that in this age of artificial intelligence, stripping identifiers from patient records to protect identity does not protect all patients equally.

The researchers audited AI diagnostic models trained on clinical data, including chest X-rays, electrocardiograms and electronic health records. They asked whether an outsider could tell if a particular person’s data had been used to build the model. For instance, confirming that someone’s record helped train a cancer-prediction tool can reveal that that person has cancer. This exploit is known as a .

The research team found that while the average risk of being identified from data stripped of identifying information often looked reassuringly low, some patients faced near-certain reidentification The burden fell unevenly: , sorted by race, insurance status or diagnosis, were most at risk. Those most exposed were frequently already most vulnerable to discrimination.

Researchers have long established that removing identifiers from rich datasets the people in them, and that identification gets easier the more information you have. Today’s AI technology makes it possible to carry out these attacks remotely and quickly.

The same privacy problems, exported

The U.S. government’s appetite for health data does not stop at the border. As ProPublica reported in June 2026, the State Department has been conditioning lifesaving aid to African nations on access to their citizens’ health data.

Under the Trump administration’s , Uganda agreed to give the United States to nine of its health data systems for seven years, including the central repository of the nation’s health information and the system managing individual electronic medical records, in exchange for up to US$1.7 billion over five years, a sum that shrinks each year and falls below prior U.S. support. ; Zambia, Zimbabwe and Ghana walked away from the initial terms.

The U.S. government has promised that the data will be aggregated and anonymized, but privacy experts warn that the agreements are vague and omit standard limits on how much data is taken and how it can be used. A Ugandan digital rights lawyer called the choice his country faced the essence of : Accept the deal and risk exploitation, or refuse it and watch people die.

The common thread

Domestic records collection and foreign data-for-aid deals rest on the same faith that anonymization neutralizes the risk of pooling sensitive health data.

The evidence says otherwise. This does not mean health data should never be gathered or studied, but I believe that the reassurances deserve skepticism, the safeguards deserve scrutiny, and the people whose bodies generated the data deserve a say. To safeguard privacy, a government seeking sensitive medical records should have to show why it needs them and how the safeguards it relies on hold up.

Privacy law was built for a world where data resided in filing cabinets. Governments from Kalamazoo to Kampala now operate in a world where even an anonymized digital record can point back to you.

This article is part of a that explores who collects your data, what and how they collect, who sells and buys your data, what they all do with it and what you can do about it.