Data brokers and grieving a friend

Wednesday, February 14, 2023

By Courtney Wise

We also look at data brokers who are capitalizing on personal data from users of mental health apps and at the criminalization of women who have used drugs and experienced miscarriages. Plus, we take a look at curanderos (traditional healers) and – as a Valentine’s Day bonus – we share a classic Modern Love piece from the New York Times.

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Sometimes, showing up is all you can do

Last year, depression was the primary cause of death of New York Times columnist writer David Brooks’ best friend, Peter Marks, a celebrated eye surgeon with a loving family, career, and friends. In an essay honoring the relationship the pair nurtured for more than 50 years, Brooks wrote of the life Marks lived, the joy they experienced in friendship – and how Brooks found himself struggling to help his friend as his despair played out over the last few years.

Like a lot of people, Brooks wrote, “I did not understand the seriousness of the situation. That’s partly temperamental. Some people catastrophize and imagine the worst. I tend to bright-icize and assume that everything will work out. But it’s also partly because I didn’t realize that depression had created another Pete. I had very definite ideas in my head about who Pete was, and depression was not part of how I understood my friend.”

It took Brooks time to become the supportive friend that Marks needed as he faced severe depression, to understand that showing up could mean just sitting with Marks in the midst of his “living nightmare.” As a physician, his friend turned to the medical system for help, but got treatments that failed. Rather than coordinate care for mental health patients across a team of medical providers, as is typical for cancer patients, he was treated by doctors who didn’t collaborate or even communicate with other care-givers. If a treatment didn’t work, Marks would start anew with someone else. 

“If this is our best,” Marks’ wife said, “it is not nearly good enough.”

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‘Our health data is part of someone’s business model’

The practice of mining the internet for users’ personal information isn’t new; a big piece of the internet economy focuses on collecting and reselling Americans’ data to better target ads. But as the pandemic pushed mental health apps into the mainstream, data brokers jumped on the opportunity to capitalize on Americans’ search for support, the Washington Post reports. 

A team of researchers at Duke University published a study this week showing that companies are selling data by the bundle that includes not just peoples’ emails and hobbies, but also their medications, their mental health troubles, and notes on illnesses they may be facing, like Alzheimer’s disease or bladder-control issues. Some brokers “hid” personally identifying features, giving details about a certain group of people in a neighborhood or ZIP code. But others offered spreadsheets identifying people by name, address, income, and mental health ailment. Aside from general privacy concerns, data brokers may be tapped by health insurance companies and federal law enforcement to track people’s medical costs and pursue undocumented immigrants.

Some data brokers offer opt-out forms, but since companies don’t typically disclose where they get their data, many people don’t realize their information is in databases. And the mental health apps themselves aren’t always clear about allowing users to refuse to share data in the first place, said Joanne Kim, a researcher on the Duke study. It’s often written into privacy policies (many left unread) that when signing up for an app, users give companies the right to share their data with advertisers and “third-party partners.” 

To date, despite some efforts to tighten rules on the gathering and sharing of health data, the data broker industry remains unregulated at the federal level. “It’s a hideous practice, and they’re still doing it,” said Pam Dixon, founder and executive director of the World Privacy Forum. “Our health data is part of someone’s business model. They’re building inferences and scores and categorizations from patterns in your life, your actions, where you go, what you eat — and what are we supposed to do, not live?” 

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Criminalizing drug users for pregnancy loss

Against the advice of the medical community, more than 50 women have been prosecuted for child neglect or manslaughter because they had a miscarriage and then tested positive for drug use, according to a collaborative investigation from The Marshall Project, The Frontier and AL.com, co-edited and published by the Washington Post. Contributor Laurie Udesky reported on this issue for MindSite News last August. 

These women are among the few people in prison for using drugs; most laws criminalize drug possession or sales, but not consumption. 

Prosecutors who support the practice believe it’s a deterrent that can push women into treatment. “It stops the cycle; it stops them getting pregnant again and using drugs and trying to get around it,” said Brian Hermanson, district attorney for two small Oklahoma counties. But researchers say the causes of miscarriages and stillbirths remain complex and unclear and that healthy babies are born daily to mothers who used drugs while pregnant. Many anti-abortion advocates are against prosecuting women for pregnancy loss. The National Right to Life Committee has said that “any measure seeking to criminalize or punish women is not pro-life.” 

Legal experts believe such cases will become more common due to the overturning of Roe v. Wade, as prosecutors use the concept of “fetal personhood” to sentence women suffering from addiction to prison. The Supreme Court’s decision in the Dobbs case last summer ended a key protection in Roe v. Wade that viewed fetuses as still part of the mother until they could survive beyond the womb. 

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In other news…

On Valentine’s Day, let’s take a look back at these pieces the NYT first shared in its Modern Love column back in 2015: The classic essay, “To Fall in Love With Anyone, Do This,” by Mandy Len Catron. (For greater insight, review the list of 36 questions she employed in her effort.)

Latinos who don’t trust doctors turn to curanderos (traditional healers), the Los Angeles Times reports. “The philosophy behind curanderismo is that diseases are not just caused by physical factors, but also social, emotional, environmental and spiritual ones,” said Grace Sesma, a healer based in Alpine, CA. “There’s a spiritual aspect to all of us as human beings that not everyone is equipped to take care of, to handle or to address.”

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If you or someone you know is in crisis or experiencing suicidal thoughts, call or text 988 to reach the 988 Suicide & Crisis Lifeline and connect in English or Spanish. If you’re a veteran press 1. If you’re deaf or hard of hearing dial 711, then 988. Services are free and available 24/7.

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