Are you a registered Democrat? You could be more likely to experience anxiety these days, causing you to need more mental health care. Have you lived in neighborhoods near industrial zones? That could increase your chance of chronic illness. Do you buy video or board games? You might be less likely to exercise, raising your medical costs in the long term.

According to an investigation that ProPublica and NPR released on Tuesday, health insurers have begun acquiring huge amounts of non-health-related data about the people they insure or will potentially insure. This data includes race, net worth, consumer behavior, criminal and civil court records, and prior addresses, among other things. Health insurers buy it from data brokers, who scoop up pretty much everything from the data trails we all leave behind as we move through the world. Those data brokers, as well as the health insurers themselves, also create algorithms to find relevant patterns in this data — like relationships between particular purchasing habits or life events and increased health care expenditures. 

While health insurers claim they’re not using these algorithms to set insurance costs for individuals, they’re unable to cite any law that would prevent them from doing just that. And considering that the very purpose of insurance is to assess risk and charge customers accordingly, there’s a very real concern that insurers will start using these algorithms to set their fees.

Existing health disparities mean that data will consistently show members of certain groups to be more likely to need more health care. What will happen, then, if this data starts being used against those groups? We know, for example, that Black women are much more likely to experience serious complications from pregnancy than white women. So, health insurers might conclude that a woman who is Black and recently married is likely to cost them more money than a white woman in the same position. Even in cases where they don’t have accurate race data, insurers might draw the same conclusion for women who purchase Black hair-care products or those who have tweeted about television shows like Atlanta or Scandal.

More broadly, people who live in poor neighborhoods and neighborhoods of color are much more likely to have health problems than those in affluent neighborhoods. The ProPublica piece quotes one health data vendor joking, “God forbid you live on the wrong street these days … You’re going to get lumped in with a lot of bad things.” Is it fair to make health care more expensive for people based on zip code or race?

The Affordable Care Act prohibits insurers from discriminating on the basis of pre-existing conditions or gender, but it doesn’t say anything about race, religion, national origin, or anything else insurers can learn about you from data brokers. At the state level, where insurance in this country is largely regulated, more than half of states don’t even ban using race explicitly in pricing health insurance. That’s a problem, especially in the age of big data, when it’s extremely tempting for insurers to raise prices for customers they perceive to be risky, sometimes in order to drive them away. Actors in other lines of insurance, like auto or homeowners’ insurance, have started to use digital data to raise prices for customers who they predict won’t switch insurers if their rates go up. It’s a big enough problem that 20 states have issued bulletins banning the practice.

Historical and ongoing racial discrimination has created an enormous racial wealth gap, and because we continue to live in such a segregated country, almost all the data held by data brokers reflects and encodes racial disparities. When predictive models are built using this data, people of color are consistently disadvantaged — Black people whose credit scores are as good or better than those of whites might not get a loan simply because of the neighborhood in which they live.

If that happens in the lending context, the federal Equal Credit Opportunity Act protects the borrower. When similar algorithmic discrimination occurs in the housing market, the Fair Housing Act provides protection, as does Title VII when there’s a job at issue. Since, in addition to barring intentional discrimination, each of these statutes prohibits neutral policies that nonetheless have a disparate impact on members of protected groups — like people of color — they are vital in the era of algorithmic decision-making. (Although the Trump Administration is doing its best to get rid of this crucial “disparate impact” standard.)

The ProPublica report shows that the danger of discrimination in insurance is increasingly real. But there’s a big hole in civil rights law when it comes to insurance. State legislatures should explore new ways to prevent discrimination in health insurance, including requirements that insurers audit their own use of consumer data for discriminatory effects and publish the results. Consumers deserve no less.

On a recent day in April, I left my doctor’s office elated. I was carrying my first prescriptions for hormone therapy. I was finally going to start seeing my body reflect my gender identity and the woman I’ve always known myself to be.

I went straight from my doctor to the CVS in my town, Fountain Hills, Arizona, which is a suburb of Phoenix. I handed over the three prescriptions that my doctor, who specializes in hormone therapy, had just given me.

That’s when my day took a turn. After years of working to affirm my identity in a world where transgender people are questioned constantly about how well they know themselves, the pharmacist refused to fill one of the prescriptions needed to affirm my identity.

He did not give me a clear reason for the refusal. He just kept asking, loudly and in front of other CVS staff and customers, why I was given the prescriptions.

Embarrassed and distressed, I nearly started crying in the middle of the store. I didn’t want to answer why I had been prescribed this hormone therapy combination by my doctor. I felt like the pharmacist was trying to out me as transgender in front of strangers. I just froze and worked on holding back the tears.

When I asked for my doctor’s prescription note, the pharmacist refused to give it back, so I was not even able to take it to another pharmacy to have my prescription filled. I left the store feeling mortified.

When I got home, I called my doctor’s office to explain what happened. The office staff tried to intervene by calling the pharmacist, but he still refused to fill my prescription without explicitly explaining why. My doctor ended up having to call the prescription into the local Walgreens, where the medication was filled without question. I transferred all of my prescriptions there so that I never again have to see the pharmacist who discriminated against me.

I have contacted CVS’ corporate complaint line multiple times, but no one has addressed my concerns or offered me an apology.

Tell CVS: Transgender Customers Need Their Prescriptions, Too

My family supports me, fortunately, and helped me work through the anger and humiliation this experience caused. But many other transgender people are not as fortunate as I am. I don’t want to think about what might happen if this pharmacist mistreats a transgender person who does not have a good social support system.

Today, I filed a complaint with the Arizona State Board of Pharmacy and am publicly asking CVS to take action and apologize for the way I was treated. CVS has received perfect marks for the past four years in the Human Rights Campaign’s Corporate Equality Index, which is a valuable tool for assessing corporate policies and practices pertinent to lesbian, gay, bisexual, transgender and queer employees. But something is still not right. Measures should be in place to ensure no other customer is humiliated like I was.

Through training and written policies, the company needs to make it clear to their employees — especially their pharmacists — that transgender customers deserve respect. No healthcare worker should rely on personal beliefs to reject decisions made by doctors and their transgender patients about medically necessary care.

In October 2017, I went to court to stop the Trump administration from blocking a young immigrant from obtaining an abortion. She had crossed into the United States the month before and discovered she was pregnant soon after. She never had any doubt about what she wanted to do. But the Trump administration had other plans for her. 

Her plea, which I relayed to a three-judge appeals panel, was: “Please stop delaying my decision any longer.” That panel included Judge Brett Kavanaugh, and her plea went unheeded.  

In the only abortion case heard by President Trump’s nominee to the Supreme Court, Judge Kavanaugh issued a decision that would have forced Jane to further delay her abortion, almost a full month after she first sought it. Ultimately, the full appeals court reversed his decision, ending the government’s obstruction in the dramatic case. 

While Judge Kavanaugh’s decision was cause for concern when it was issued last year, it’s taken on far more importance now, given his nomination to the high court and the clues it provides about how he might shift the course of reproductive rights in this country. Although the ACLU neither endorses nor opposes Supreme Court nominees, we do have an obligation to analyze Kavanaugh's judicial record on areas that impact core civil liberties and civil rights.  

Jane Doe, a pregnant 17-year-old unaccompanied immigrant minor who was abused by her parents in her home country, was effectively held hostage by the government to stop her from accessing abortion. The Trump administration ordered the private shelter where she was staying to prevent her from going to any abortion-related appointments. While the court battle raged, the government's obstructionism pushed Doe further along in her pregnancy against her will. She always remained resolute in her decision to terminate her pregnancy. Yet day after day, she was forced to sit in the shelter, waiting to hear whether she would be able to have an abortion or whether she would be forced to carry the pregnancy to term.   

Although we secured an emergency order from a lower court allowing Doe to have the abortion, the government appealed. Over a vigorous dissent by Judge Patricia Millett, Judge Kavanaugh wrote a decision that allowed the government to further obstruct Jane’s abortion. 

By the time of Judge Kavanaugh’s ruling, the Trump administration had already delayed Doe’s abortion by almost a month. The decision allowed the government to continue to obstruct her abortion while the government looked for a sponsor for Jane, which they had been unsuccessful in finding for the prior month and a half. As Judge Millett put it, there was no “reason to think that a sponsor” could be found in “short order.” As a result, Judge Kavanaugh’s order would force Doe to delay her abortion for “multiple more weeks.” 

Because further delay was clearly unacceptable, we asked the full court of appeals to review the case. It did so, and reversed Judge Kavanaugh’s decision, ordering the government to allow Doe to have an abortion without further delay. 

The full court largely adopted the reasoning in Judge Millett’s dissent, which explained why the panel decision written by Judge Kavanaugh ignored both the harm to Jane and binding Supreme Court precedent. She wrote that forcing Jane Doe to remain pregnant against her will sacrifices her “constitutional liberty, autonomy, and personal dignity for no justifiable government reason.” 

Judge Kavanaugh, for his part, issued his own vigorous dissent from the full court’s opinion, saying the court had “badly erred in this case,” by relying on “a constitutional principle as novel as it is wrong.” He argued that the government should be given time to place Jane with a sponsor so she could be with a family member, notwithstanding the fact that it takes weeks or months to locate a suitable sponsor, that she had already made her decision, that she had obtained a court order allowing her to consent to the abortion on her own, and that she had a court-appointed guardian looking out for her best interests. 

We are at a critical moment in history. President Trump has vowed to appoint Supreme Court justices who would overturn Roe v. Wade. Given that Judge Kavanaugh allowed the government to further obstruct Jane Doe’s access to abortion, we should all be gravely concerned about what his appointment means for the future of Roe.  

But we can’t just limit our focus to the question of whether Roe will be overturned. The right to abortion could also be eviscerated if the court upholds dangerous restrictions on abortion — even short of an outright ban. 

Indeed, Roe didn’t stop Judge Kavanaugh from giving the government a pass to keep obstructing Jane’s abortion access. The right to abortion means nothing if a woman can’t exercise it without shame, stigma, and obstacles. The Senate, therefore, has an obligation to ask Judge Kavanaugh during his confirmation hearing not just whether abortion is constitutionally protected, but how far the government can go to restrict a woman’s access. 

This is not an academic exercise. Jane’s is just one of the stories behind this critical constitutional right. Being forced to remain pregnant for weeks took an emotional and physical toll on her. If the courts weren’t there to stop the Trump administration, what would have happened to her? 

As Doe later said, “I dream about studying, becoming a nurse, and one day working with the elderly.” Every person should have the ability to make the best decision for herself as well as the chance to pursue her dreams without fear of a government official or judge getting in the way.