Day: May 22, 2022

When Chandler Jones realized she was pregnant during her junior year of college, she turned to a trusted source for information and advice.

Her cellphone.

“I couldn’t imagine before the internet, trying to navigate this,” said Jones, 26, who graduated Tuesday from the University of Baltimore School of Law. “I didn’t know if hospitals did abortions. I knew Planned Parenthood did abortions, but there were none near me. So I kind of just Googled.”

But with each search, Jones was being surreptitiously followed — by the phone apps and browsers that track us as we click away, capturing even our most sensitive health data.

Online searches. Period apps. Fitness trackers. Advice helplines. GPS. The often obscure companies collecting our health history and geolocation data may know more about us than we know ourselves.

For now, the information is mostly used to sell us things, like baby products targeted to pregnant women. But in a post-Roe world — if the Supreme Court upends the 1973 decision that legalized abortion, as a draft opinion suggests it may in the coming weeks — the data would become more valuable, and women more vulnerable.

Privacy experts fear that pregnancies could be surveilled and the data shared with police or sold to vigilantes.

“The value of these tools for law enforcement is for how they really get to peek into the soul,” said Cynthia Conti-Cook, a lawyer and technology fellow at the Ford Foundation. “It gives [them] the mental chatter inside our heads.”

HIPAA, hotlines, health histories

The digital trail only becomes clearer when we leave home, as location apps, security cameras, license plate readers and facial recognition software track our movements. The development of these tech tools has raced far ahead of the laws and regulations that might govern them.

And it’s not just women who should be concerned. The same tactics used to surveil pregnancies can be used by life insurance companies to set premiums, banks to approve loans and employers to weigh hiring decisions, experts said.

Or it could — and sometimes does — send women who experience miscarriages cheery ads on their would-be child’s birthday.

It’s all possible because HIPAA, the 1996 Health Insurance Portability and Accountability Act, protects medical files at your doctor’s office but not the information that third-party apps and tech companies collect about you. Nor does HIPAA cover the health histories collected by non-medical “crisis pregnancy centers, ” which are run by anti-abortion groups. That means the information can be shared with, or sold to, almost anyone.

Jones contacted one such facility early in her Google search, before figuring out they did not offer abortions.

“The dangers of unfettered access to Americans’ personal data have never been more clear. Researching birth control online, updating a period-tracking app or bringing a phone to the doctor’s office could be used to track and prosecute women across the U.S.,” Sen. Ron Wyden, D-Ore., said last week.

For myriad reasons, both political and philosophical, data privacy laws in the U.S. have lagged far behind those adopted in Europe in 2018.

Until this month, anyone could buy a weekly trove of data on clients at more than 600 Planned Parenthood sites around the country for as little as $160, according to a recent Vice investigation that led one data broker to remove family planning centers from the customer “pattern” data it sells. The files included approximate patient addresses (down to the census block, derived from where their cellphones “sleep” at night), income brackets, time spent at the clinic, and the top places people stopped before and after their visits.

While the data did not identify patients by name, experts say that can often be pieced together, or de-anonymized, with a little sleuthing.

In Arkansas, a new law will require women seeking an abortion to first call a state hotline and hear about abortion alternatives. The hotline, set to debut next year, will cost the state nearly $5 million a year to operate. Critics fear it will be another way to track pregnant women, either by name or through an identifier number. Other states are considering similar legislation.

The widespread surveillance capabilities alarm privacy experts who fear what’s to come if Roe v. Wade is overturned. The Supreme Court is expected to issue its opinion by early July.

“A lot of people, where abortion is criminalized — because they have nowhere to go — are going to go online, and every step that they take (could) … be surveilled,” Conti-Cook said.

Punish women, doctors or friends?

Women of color like Jones, along with poor women and immigrants, could face the most dire consequences if Roe falls since they typically have less power and money to cover their tracks. They also tend to have more abortions, proportionally, perhaps because they have less access to health care, birth control and, in conservative states, schools with good sex education programs.

The leaked draft suggests the Supreme Court could be ready to let states ban or severely restrict abortion through civil or criminal penalties. More than half are poised to do so. Abortion foes have largely promised not to punish women themselves, but instead target their providers or people who help them access services.

“The penalties are for the doctor, not for the woman,” Republican state Rep. Jim Olsen of Oklahoma said last month of a new law that makes performing an abortion a felony, punishable by up to 10 years in prison.

But abortion advocates say that remains to be seen.

“When abortion is criminalized, pregnancy outcomes are investigated,” said Tara Murtha, the communications director at the Women’s Law Project in Philadelphia, who recently co-authored a report on digital surveillance in the abortion sphere.

She wonders where the scrutiny would end. Prosecutors have already taken aim at women who use drugs during pregnancy, an issue Justice Clarence Thomas raised during the Supreme Court arguments in the case in December.

“Any adverse pregnancy outcome can turn the person who was pregnant into a suspect,” Murtha said.

State limits, tech steps, personal tips

A few states are starting to push back, setting limits on tech tools as the fight over consumer privacy intensifies.

Massachusetts Attorney General Maura Healey, through a legal settlement, stopped a Boston-based ad company from steering anti-abortion smartphone ads to women inside clinics there that offer abortion services, deeming it harassment. The firm had even proposed using the same “geofencing” tactics to send anti-abortion messages to high school students.

In Michigan, voters amended the state Constitution to prohibit police from searching someone’s data without a warrant. And in California, home to Silicon Valley, voters passed a sweeping digital privacy law that lets people see their data profiles and ask to have them deleted. The law took effect in 2020.

The concerns are mounting, and have forced Apple, Google and other tech giants to begin taking steps to rein in the sale of consumer data. That includes Apple’s launch last year of its App Tracking Transparency feature, which lets iPhone and iPad users block apps from tracking them.

Abortion rights activists, meanwhile, suggest women in conservative states leave their cellphones, smartwatches and other wearable devices at home when they seek reproductive health care, or at least turn off the location services. They should also closely examine the privacy policies of menstrual trackers and other health apps they use.

“There are things that people can do that can help mitigate their risk. Most people will not do them because they don’t know about it or it’s inconvenient,” said Nathan Freed Wessler, a deputy director with the ACLU’s Speech, Privacy, and Technology Project. “There are very, very few people who have the savvy to do everything.”

Digital privacy was the last thing on Jones’s mind when she found herself pregnant. She was in crisis. She and her partner had ambitious career goals. After several days of searching, she found an appointment for an abortion in nearby Delaware. Fortunately, he had a car.

“When I was going through this, it was just survival mode,” said Jones, who took part in a march Saturday in downtown Baltimore to support abortion rights.

Besides, she said, she’s grown up in the Internet age, a world in which “all of my information is being sold constantly.”

But news of the leaked Supreme Court draft sparked discussions at her law school this month about privacy, including digital privacy in the era of Big Data.

“Literally, because I have my cell phone in my pocket, if I go to a CVS, they know I went to a CVS,” the soon-to-be lawyer said. “I think the privacy right is such a deeper issue in America [and one] that is being violated all the time.”

Source: Voice of America

After mass shootings killed and wounded people grocery shopping, going to church and simply living their lives last weekend, the nation marked a milestone of 1 million deaths from COVID-19. The number, once unthinkable, is now an irreversible reality in the United States — just like the persistent reality of gun violence that kills tens of thousands of people every year.

Americans have always tolerated high rates of death and suffering — among certain segments of society. But the sheer numbers of deaths from preventable causes, and the apparent acceptance that no policy change is on the horizon, raises the question: Has mass death become accepted in America?

“I think the evidence is unmistakable and quite clear. We will tolerate an enormous amount of carnage, suffering and death in the U.S., because we have over the past two years. We have over our history,” says Gregg Gonsalves, an epidemiologist and professor at Yale who, before that, was a leading member of the AIDS advocacy group ACT UP.

“If I thought the AIDS epidemic was bad, the American response to COVID-19 has sort of … it’s a form of the American grotesque, right?” Gonsalves says. “Really — a million people are dead? And you’re going to talk to me about your need to get back to normal, when for the most part most of us have been living pretty reasonable lives for the past six months?”

Certain communities have always borne the brunt of higher death rates in the United States. There are profound racial and class inequalities in the United States, and our tolerance of death is partly based on who is at risk, says Elizabeth Wrigley-Field, a sociology professor at the University of Minnesota who studies mortality.

“Some people’s deaths matter a lot more than others,” she laments. “And I think that’s what we’re seeing in this really brutal way with this coincidence of timing.”

In Buffalo, the alleged shooter was a racist bent on killing as many Black people as he could, according to authorities. The family of 86-year-old Ruth Whitfield, one of 10 people killed there in an attack on a grocery store that served the African American community, channeled the grief and frustration of millions as they demanded action, including passage of a hate crime bill and accountability for those who spread hateful rhetoric.

“You expect us to keep doing this over and over and over again — over again, forgive and forget,” her son, former Buffalo Fire Commissioner Garnell Whitfield Jr., told reporters. “While people we elect and trust in offices around this country do their best not to protect us, not to consider us equal.”

That sense — that politicians have done little even as the violence repeats itself – is shared by many Americans. It’s a dynamic that’s encapsulated by the “thoughts and prayers” offered to victims of gun violence by politicians unwilling to make meaningful commitments to ensure there really is no more “never again,” according to Martha Lincoln, an anthropology professor at San Francisco State University who studies the cultural politics of public health.

“I don’t think that most Americans feel good about it. I think most Americans would like to see real action from their leaders in the culture about these pervasive issues,” says Lincoln, who adds that there is a similar “political vacuum” around COVID-19.

The high numbers of deaths from COVID-19, guns and other causes are difficult to fathom and can start to feel like background noise, disconnected from the individuals whose lives were lost and the families whose lives were forever altered.

With COVID-19, American society has even come to accept the deaths of children from a preventable cause. In a recent guest column published in The Advocate newspaper, pediatrician Dr. Mark W. Kline pointed out that more than 1,500 children have died from COVID-19, according to the U.S. Centers for Disease Control and Prevention, despite the “myth” that it is harmless for children. Kline wrote that there was a time in pediatrics when “children were not supposed to die.”

“There was no acceptable pediatric body count,” he wrote. “At least, not before the first pandemic of the social media age, COVID-19, changed everything.”

There are many parallels between the U.S. response to COVID-19 and its response to the gun violence epidemic, says Sonali Rajan, a professor at Columbia University who researches school violence.

“We have long normalized mass death in this country. Gun violence has persisted as a public health crisis for decades,” she says, noting that an estimated 100,000 people are shot every year and some 40,000 will die.

Gun violence is such a part of life in America now that we organize our lives around its inevitability. Children do lockdown drills at school. And in about half the states, Rajan says, teachers are allowed to carry firearms.

When she looks at the current response to COVID-19, she sees similar dynamics. Americans, she says, “deserve to be able to commute to work without getting sick, or work somewhere without getting sick, or send their kids to school without them getting sick.”

“What will happen down the line if more and more people get sick and are disabled?” she asks. “What happens? Do we just kind of live like this for the foreseeable future?”

It’s important, she says, to ask what policies are being put forth by elected officials who have the power to “attend to the health and the well-being of their constituents.”

“It’s remarkable how that responsibility has been sort of abdicated, is how I would describe it,” Rajan says.

The level of concern about deaths often depends on context, says Rajiv Sethi, an economics professor at Barnard College who has written about both gun violence and COVID-19. He points to a rare but dramatic event such as an airplane crash or an accident at a nuclear power plant, which do seem to matter to people.

By contrast, something like traffic deaths gets less attention. The government this week said that nearly 43,000 people had died on the nation’s roads last year, the highest level in 16 years. The federal government unveiled a national strategy earlier this year to combat the problem.

Even when talking about gun violence, the Buffalo shooting has gotten a lot of attention, but mass shootings represent a small number of the gun deaths that happen in the United States every year, Sethi says. For example, there are more suicides from guns in America than there are homicides, an estimated 24,000 gun suicides compared with 19,000 homicides. But even though there are policy proposals that could help within the bounds of the Second Amendment, he says, the debate on guns is politically entrenched.

“The result is that nothing is done,” Sethi says. “The result is paralysis.”

Dr. Megan Ranney of Brown University’s School of Public Health calls it a frustrating “learned helplessness.”

“There’s been almost a sustained narrative created by some that tells people that these things are inevitable,” says Ranney, an ER doctor who did gun violence research before COVID-19 hit. “It divides us when people think that there’s nothing they can do.”

She wonders if people really understand the sheer numbers of people dying from guns, from COVID-19 and from opioids. The CDC said this month that more than 107,000 Americans died of drug overdoses in 2021, setting a record.

Ranney also points to false narratives spread by bad actors, such as denying that the deaths were preventable, or suggesting those who die deserved it. There is an emphasis in the United States on individual responsibility for one’s health, Ranney says — and a tension between the individual and the community.

“It’s not that we put less value on an individual life, but rather we’re coming up against the limits of that approach,” she says. “Because the truth is, is that any individual’s life, any individual’s death or disability, actually affects the larger community.”

Similar debates happened in the last century about child labor laws, worker protections and reproductive rights, Ranney says.

An understanding of history is important, says Wrigley-Field, who teaches the history of ACT UP in one of her classes. During the AIDS crisis in the 1980s, the White House press secretary made anti-gay jokes when asked about AIDS, and everyone in the room laughed. Activists were able to mobilize a mass movement that forced people to change the way they thought and forced politicians to change the way they operated, she says.

“I don’t think that those things are off the table now. It’s just that it’s not really clear if they’re going to emerge,” Wrigley-Field says. “I don’t think giving up is a permanent state of affairs. But I do think that’s where we’re at, right at this moment.”

Source: Voice of America