Hi there,
I saw a tweet the other day that said:
If you are using an online period tracker or tracking your cycles through your phone, get off it and delete your data. Now.
How your data can be used against you
Last week a draft majority opinion from the US Supreme Court supporting overturning Roe v. Wade was leaked. This would remove women’s rights to an abortion on a national level, allowing state laws to come into effect. It’s expected that 26 of 50 states will criminalise abortion if this occurs.
The data on when you last had your period is of great interest to those who believe abortion should be illegal.
Prosecutors can use it to ‘prove’ pregnancy loss in court. And companies stand to profit from selling this data to law enforcement.
For example, data broker SafeGraph has already been selling the location data of people who visit Planned Parenthood and family planning clinics. While the data is aggregated, it likely can be used to identify individuals.
Last year, the FTC sanctioned Flo, a cycle tracking app, for sharing menstrual data with Facebook, Google, and more. Despite promising to keep sensitive user data private, they shared it. Users were outraged.
Even if companies don’t sell your data (for example, Clue has committed to not selling customer data), it can still be subpoenaed by prosecutors. Companies can push back on a request, but the court can force them to comply. They end up providing the data in about 80% of cases.
Flo has now removed the ability to log abortions from their app, likely so they can’t be forced to provide this data to governments.
Companies developing these types of apps need to re-evaluate the data they are storing in the context of how it could be used to cause harm or for surveillance.
It’s not just period tracking and contraception apps that we need to be concerned about. Data from the technology we use every day can be used against us. Your Google search history can reveal if you were looking for information on abortions. Clicking on a pro-choice ad on social media means you can be uniquely identified. Text messages and numbers you’ve called are saved and can be accessed by your phone company.
How does this relate to us in the UK?
Most of my readers are based in the UK. You might be thinking: everything happening across the pond is awful, but it doesn’t affect me… right?
Questionable data sharing
Discrimination
Digital health apps can help us better understand our bodies and feel more empowered. The nature of these products means we’re providing very personal information, particularly in the context of reproductive health.
No one actually reads the inaccessible privacy policies that we have to agree to in order to use these apps. When companies say things like “Your privacy is important to us” just above where you tick “accept”, we might naively assume that this is true and our data will be kept private.
Protecting women’s health data is not only important in relation to abortion.
If you’re accessing digital health products via an employer or health insurance company, the data may be shared with them. This means an employer can see data on how many of its employees are pregnant or trying to get pregnant. Again, while this data might be presented in aggregate, it wouldn’t be difficult to work out who these employees are. It’s well known that companies discriminate against pregnant employees (even though it’s illegal).
Immigration
If you think that law enforcement in the UK isn’t accessing our health data - think again.
NHS patient data is shared with the Home Office under the “hostile environment” migration policy. This data is used to track undocumented migrants and might lead people to avoid seeking medical care. For example, those with uncertain immigration status might have been hesitant to get the Covid vaccine.
Giving law enforcement access to health data is not in the interest of public health.
Data breaches
Simply collecting and storing health data is risky. Even if it’s not shared knowingly, it can be hacked.
In early 2019, the Singapore Ministry of Health had a data breach. This resulted in the HIV test results, and medical and contact information of over 14,000 people being shared online. HIV-positive people still face a lot of stigma in Singapore. Up until 2015, there was a total ban on HIV-positive people entering the country, and foreigners with HIV were not allowed to work there.
The breach had a significant impact on people’s lives, with concerns about losing their jobs and people close to them finding out their HIV status.
Abortion in the UK
Fortunately, sentiment in the UK around abortion is primarily pro-choice. A recent YouGov poll shows that 86% of people in England, Scotland, and Wales believe women should have the right to an abortion.
However, abortion without permission is still a criminal offence in the UK.
In England, Scotland, and Wales, you need to seek the permission of two doctors, and they both must agree that having an abortion is necessary. You need to explain to them why you want an abortion, and it needs to be before 24 weeks (unless the mother’s life is in danger or the baby would be born with a serious disability). If you don’t seek permission, you can face life in prison.
The attempt to ban at-home abortions was defeated in Parliament earlier this year, but women still face barriers to access. Having to consult two doctors can cause delays, and doctors might be reluctant to grant permission. These hurdles and the fact that it’s a criminal offence also help to reinforce the stigma associated with abortion.
Abortion should be removed from criminal law. It should be regulated like every other medical procedure in the UK.
While abortion rights are better in the UK (other than Northern Ireland) than in the US, the possibility of overturning Roe v. Wade will undoubtedly encourage the anti-abortion activists here. Katherine O'Brien, from the British Pregnancy Advisory Service, states: “Anti-abortion groups in the UK work closely with their counterparts in the US, receiving funding and training. We are concerned that a perceived 'victory' for anti-choice groups in America will lead to an escalation in clinic protests here.”
Parliament still hasn’t introduced buffer zones to protect staff and patients at abortion clinics from harassment by anti-abortion protestors.
We aren’t going back in time like the US, but there are still improvements to be made.
Links of the week
Companies misusing our private health data feels like an egregious breach of trust. But in a way, it’s not surprising. The technology we use is created by for-profit companies. They’re not collecting this data with our best interest at heart.
With that, here are some ways you can protect your online privacy:
Disable your mobile ID to limit the ways that companies can connect your activities
Turn off location sharing (the above link details how to do this)
Opt-out of personalised ads on Google
Opt-out of targeted ads on Facebook and Instagram
Use DuckDuckGo instead of Google to search. Google saves all your searches. DuckDuckGo is a privacy-focused search engine that does not save your search data or collect any information about you.
That’s all for now. Have a great week!
Interesting related area is law enforcement (or amateur sleuth) access to genetic databases.
On the one hand solving cold case murders/rapes/etc is a pretty good thing but on the other hand the ability to identify people can be misused for all kinds of things.
- https://www.newyorker.com/magazine/2021/11/22/how-your-family-tree-could-catch-a-killer
- https://www.nytimes.com/2021/12/27/magazine/dna-test-crime-identification-genome.html