Friend, I’m excited about this: I’ve just reintroduced my bill, the My Body, My Data Act, in the House of Representatives.
This is an essential piece of legislation that would create a new national standard to protect our personal reproductive health data. The bill addresses the huge gap in privacy laws that we need to fill if we’re going to keep pace with the new and emerging technologies we use every day. By minimizing the personal health data that is collected and retained by apps, cell phones, and search engines, we can prevent our data from being disclosed, misused, or weaponized.
That last piece - the weaponization of our data - is the dystopian-level threat that we’re actually facing right now, so let’s talk about it for a minute. Listen, apps and websites have been collecting and using our personal data for years - we know that, and it can be helpful! - but in this post-Roe v. Wade era, we’re seeing the consequences of this digital surveillance intensify.
Every day - every minute that we’re on our phones and devices - we’re generating data that could be used against us, or against our health care providers and allies. Our locations, search histories, texts and emails - even our reproductive health data from things like period tracking apps - it’s all collected by companies and websites that can exploit our data and ultimately lead to very real threats to our safety and privacy.
The My Body, My Data Act would address these key issues in several ways:
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Limit data collection. Prevent companies from being able to share or sell your data by ensuring that those who collect, retain, or use your personal reproductive and sexual health data are limited only to what is strictly needed to deliver a product or service.
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Expand consumer protections. We’ll provide additional protections like giving consumers the right to access, delete, or correct their personal data if they choose to do so.
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Expand data protections. Current laws like HIPAA only protect your health information when it’s being used by doctors or health insurers, leaving a huge gap in protection for data collected in apps, cell phones, and search engines.
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Require new privacy policies. Companies must develop and share a privacy policy outlining how they collect, retain, use, and disclose your personal reproductive health data.
- Enforce the law. We’ll make sure the federal trade commission (FTC) enforces the law and develops rules to implement the statute.
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Ensure accountability. Should companies violate our data, the bill includes a private right of action to allow individuals to hold them accountable. This part is a big deal.
As attacks on abortion access increase, my bill will create essential protections for vulnerable individuals. Nineteen states have already banned or severely restricted abortion - which puts people in those states at increased risk of having their digital footprints weaponized against them.
And this isn’t just a hypothetical - the criminalization of abortion (and miscarriages and stillbirths) is already happening, as prosecutors are exploiting this gap in federal data protections to enforce cruel anti-abortion laws.
We need urgent action to strengthen digital privacy and protect our reproductive health information so that it can’t be used or weaponized against us, and this bill is a great first step to creating this framework and offering some immediate solutions to deter bad actors.
If you agree, please join me by adding your name in support of my bill right now.
We have a long way to go to ensure our privacy laws address the needs of this century as new technologies continue to advance. I’m proud of this work and this bill, and I hope you know how much I appreciate your help and support in moments like these.
-Sara
