Anti-Abortion States are Weaponizing Our Health Data

This piece was written by a university student in New York City

As a college student in New York, most of my friends come from out of state. Although abortion care and hormone therapies for transgender youth are both legal in New York, this isn’t always the case in my friends’ home states. In 2022, the Supreme Court overturned Roe v. Wade, abolishing the federal constitutional right to abortion and clearing the way for twenty states to criminalize abortion care. A little over a month ago, the Supreme Court upheld a Tennessee ban on gender-affirming hormone therapies for transgender youth, limiting access to lifesaving care.

Hostile states are turning personal health decisions into crimes. As the federal government fails to protect our bodily autonomy, Governor Hochul must act now to make New York a beacon for everyone seeking care.

As a nation, we already agree that health data is personal. New Yorkers may be familiar with the Health Insurance Portability and Accountability Act, better known as HIPAA. HIPAA is a federal law that regulates the disclosure of our protected health information, ensuring that our medical records generally aren’t shared without our consent. The central role that HIPAA plays in the American health care system is proof that protecting our health privacy is already a widely recognized right. Our health is our business—and our laws should reflect this principle.

Yet HIPAA only applies to information generated in health care settings, such as hospitals or health insurance companies. In reality, much of our health information is stored in other places as well. Today, devices like smartwatches, Fitbits, and period-tracking apps store data that reveals information on our health status and health care decisions. Despite the rapidly growing databases of electronic health information, our current health privacy protections fall short of covering this data, leaving much of our information vulnerable to exploitation. Although state laws exist to limit New York law enforcement from accessing our health data, our information remains accessible to out-of-state actors.

This means out of state law enforcement can use information like records of an Uber trip to an abortion clinic in New York against their residents—even if they simply sought health care that is legal here.

The New York Health Information Privacy Act would close this gap in state law. The bill puts in place sensible privacy protections for electronic health data and gives New Yorkers more control over the distribution and use of their personal information. Importantly, among other provisions, it also mandates that companies delete a person’s electronic health data within 60 days of generation, unless the individual has given explicit consent for companies to hold on to it. It’s much harder to weaponize our health data against us when it no longer exists.

This is not a radical piece of legislation. It simply ensures that our laws are responsive to our changing medical landscape. HIPAA already covers our data in health care settings. Now it is time to make sure New York protects the rest of our health data as well.

What’s at stake goes beyond abortion care or gender-affirming therapy. All of us have something to gain here. It’s not hard to imagine why a father using a shared family computer to order erectile dysfunction medication might not like to receive targeted ads, or why someone purchasing Ozempic might not want their data to be retained.

Our health is deeply personal. Restoring control over the privacy of our health matters is commonsense, regardless of our identities. It’s in all our interests to be able to choose how our health information can be used.

With the political hostility against abortion and gender-affirming care reaching new heights, the time to act is now. As other states prove willing to track people across state lines to prosecute legal medical care providers, and patients, New York must defend us against surveillance.

New York state legislators have already signaled their support for the bill, passing it through the Assembly and the Senate with overwhelming majorities. It’s time for Governor Hochul’s to step up to the plate.

The governor has already affirmed the importance of defending New Yorkers against hostile states, signing legislation strengthening protections for abortion and gender-affirming care providers, patients, seekers, and helpers in 2022 and 2023. In her own words, “New York State is standing up to anti-choice zealots who threaten the sanctity of women’s health care and the medical professionals who provide it… My message to anyone who attacks our civil liberties is simple — not here, not now, not ever.” She has also endorsed privacy protections for electronic information, signing a law that offers young people very similar protections to those contained in the New York Health Information Privacy Act.

Governor Hochul is exactly right. New York will not permit attacks on our civil rights. She must honor her commitments to New Yorkers by signing the Health Information Privacy Act now.