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Genetic Discrimination Is Coming for Us All

The Atlantic

www.theatlantic.com › health › archive › 2024 › 11 › dna-genetic-discrimination-insurance-privacy › 680626

The news came four years ago, at the end of a casual phone call. Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS. But at the end of a catch-up, Bill’s brother revealed that he had a diagnosis too. The familial trend, it turned out, was linked to a genetic mutation. That meant Bill might also be at risk for the disease.

An ALS specialist ordered Bill a DNA test. While he waited for results, he applied for long-term-care insurance. If he ever developed ALS, Bill told me, he wanted to ensure that the care he would need as his nerve cells died and muscles atrophied wouldn’t strain the family finances. When Bill found out he had the mutation, he shared the news with his insurance agent, who dealt him another blow: “I don’t expect you to be approved,” he remembers her saying.

Bill doesn’t have ALS. He’s a healthy 60-year-old man who spends his weekends building his dream home by hand. A recent study of mutations like his suggests that his genetics increase his chances of developing ALS by about 25 percent, on average. Most ALS cases aren’t genetic at all. And yet, Bill felt like he was being treated as if he was already sick. (Bill asked to be identified by his first name only, because he hasn’t disclosed his situation to his employer and worried about facing blowback at work too.)

What happened to Bill, and to dozens of other people whose experiences have been documented by disease advocates and on social media, is perfectly legal. Gaps in the United States’ genetic-nondiscrimination law mean that life, long-term-care, and disability insurers can obligate their customers to disclose genetic risk factors for disease and deny them coverage (or hike prices) based on the resulting information. It doesn’t matter whether those customers found out about their mutations from a doctor-ordered test or a 23andMe kit.  

For decades, researchers have feared that people might be targeted over their DNA, but they weren’t sure how often it was happening. Now at least a handful of Americans are experiencing what they argue is a form of discrimination. And as more people get their genomes sequenced—and researchers learn to glean even more information from the results—a growing number of people may find themselves similarly targeted.

When scientists were mapping the immense complexity of the human genome around the turn of the 21st century, many thought that most diseases would eventually be traced to individual genes. Consequently, researchers worried that people might, for example, get fired because of their genetics; around the same time, a federal research lab was sued by its employees for conducting genetic tests for sickle-cell disease on prospective hires without their explicit consent. In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law, ensuring that employers couldn’t decide to hire or fire you, and health insurers couldn’t decide whether to issue a policy, based on DNA. But lawmakers carved out a host of exceptions. Insurers offering life, long-term-care, or disability insurance could take DNA into account. Too many high-risk people in an insurance pool, they argued, could raise prices for everyone. Those exceptions are why an insurer was able to deny Bill a long-term-care policy.

[Read: The loopholes in the law prohibiting genetic discrimination]

Cases like Bill’s are exactly what critics of the consumer-genetic-testing industry feared when millions of people began spitting into test tubes. These cases have never been tallied up or well documented. But I found plenty of examples by canvassing disease-advocacy organizations and social-media communities for ALS, breast cancer, and Huntington’s disease. Lisa Schlager, the vice president of public policy at the hereditary-cancer advocacy group FORCE, told me she is collecting accounts of discrimination in life, long-term-care, and disability insurance to assess the extent of the problem; so far, she has about 40. A man Schlager connected me with, whose genetic condition, Lynch syndrome, increases the risk for several cancers, had his life-insurance premium increased and coverage decreased; several other providers denied him a policy altogether. Kelly Kashmer, a 42-year-old South Carolina resident, told me she was denied life insurance in 2013 after learning that she had a harmful version of the BRCA2 gene. One woman I found via Reddit told me she had never tested her own DNA, but showed me documents that demonstrate she was still denied policies—because, she said, her mom had a concerning gene. (Some of the people I spoke with, like Bill, requested not to be identified in order to protect their medical privacy.)

Studies have shown that people seek out additional insurance when they have increased genetic odds of becoming ill or dying. “Life insurers carefully evaluate each applicant’s health, determining premiums and coverage based on life expectancy,” Jan Graeber, a senior health actuary for the American Council of Life Insurers, said in a statement. “This process ensures fairness for both current and future policyholders while supporting the company’s long-term financial stability.” But it also means people might avoid seeking out potentially lifesaving health information. Research has consistently found that concerns about discrimination are one of the most cited reasons that people avoid taking DNA tests.

For some genetically linked diseases, such as ALS and Huntington’s disease, knowing you have a harmful mutation does not enable you to prevent the potential onset of disease. Sometimes, though, knowing about a mutation can decrease odds of severe illness or death. BRCA mutations, for example, give someone as much as an 85 percent chance of developing breast cancer, but evidence shows that testing women for the mutations has helped reduce the rate of cancer deaths by encouraging screenings and prophylactic surgeries that could catch or prevent disease. Kashmer told me that her first screening after she discovered her BRCA2 mutation revealed that she already had breast cancer; had she not sought a genetic test, she may have gotten a policy, but would have been a much worse bet for the insurer. She’s now been cancer-free for 11 years, but she said she hasn’t bothered to apply for a policy again.

[Read: Remember that DNA you gave 23andMe?]

Even employers, which must adhere to GINA, might soon be able to hire or fire based on certain genetic risk factors. Laura Hercher, a genetic counselor and director of research at the Sarah Lawrence College Human Genetics Program, told me that some researchers are now arguing that having two copies of the APOE4 mutation, which gives people about a 60 percent chance of developing Alzheimer’s, is equivalent to a Stage Zero of the disease. If having a gene is considered equivalent to a diagnosis, do GINA’s protections still apply? The Affordable Care Act prevents health insurers from discriminating based on preexisting conditions, but not employers and other types of insurers. (The ACA may change dramatically under the coming Trump presidency anyway.) And the Americans With Disabilities Act might not apply to the gray area between what might be viewed as an early manifestation of a disease and the stage when it’s considered a disability. FORCE and other advocacy groups—including the ALS Association and the Michael J. Fox Foundation—as well as members of the National Society of Genetic Counselors, are working in a few states to pass laws that close gaps left by GINA, as Florida did in 2020, but so far they have been mostly unsuccessful.

Genetic testing has only just become common enough in the U.S. that insurers might bother asking about it, Hercher said. Recently, groups like Schlager’s have been hearing more and more anecdotes. “People are so worried about genetic discrimination that they are failing to sign up for research studies or declining medically recommended care because of the concerns of what could happen to their insurance,” Anya Prince, a professor at the University of Iowa College of Law, told me. Carolyn Applegate, a genetic counselor in Maryland, told me that when patients come to her worried about a hereditary disease, she typically advises them to line up all the extra coverage they might need first—then hand over their DNA to a lab.

So far, these unintended consequences of genetic testing seem to be manifesting for people with risk for rare diseases linked to single genes, which, combined, affect about 6 percent of the global population, according to one estimate. But the leading killers—heart disease, diabetes, and the like—are influenced by a yet unknown number of genes, along with lifestyle and environmental factors, such as diet, stress, and air quality. Researchers have tried to make sense of this complex interplay of genes through polygenic risk scores, which use statistical modeling to predict that someone has, say, a slightly elevated chance of developing Alzeheimer’s. Many experts think these scores have limited predictive power, but “in the future, genetic tests will be even more predictive and even more helpful and even more out there,” Prince said. Already, if you look deep enough, almost everyone’s genome registers some risk.

[Read: What happens when you’re convinced you have bad genes]

In aggregate, such information can be valuable to companies, Nicholas Papageorge, a professor of economics at Johns Hopkins University, told me. Insurers want to sell policies at as high a price as possible while also reducing their exposure; knowing even a little bit more about someone’s odds of one day developing a debilitating or deadly disease might help one company win out over the competition. As long as the predictions embedded in polygenic risk scores come true at least a small percentage of the time, they could help insurers make more targeted decisions about who to cover and what to charge them. As we learn more about what genes mean for everyone’s health, insurance companies could use that information to dictate coverage for ever more people.

Bill still doesn’t know whether he will ever develop ALS. The average age of onset is 40 to 60, but many people don’t show symptoms until well into their 70s. Without long-term-care insurance, Bill might not be able to afford full-time nursing care if he someday needs it. People who do develop ALS become unable to walk or talk or chew as the disease progresses. “Moving people to the bathroom, changing the sheets, changing the bedpans,” Bill said—“I dread the thought of burdening my wife with all of those things.”

Cases like Bill’s could soon become more common. Because scientists’ understanding of the human genome is still evolving, no one can predict all of the potential consequences of decoding it. As more information is mined from the genome, interest in its secrets is sure to grow beyond risk-averse insurers. If consumer-facing DNA-testing companies such as 23andMe change their long-standing privacy policies, go bankrupt, or are sold to unscrupulous buyers, more companies could have access to individuals’ genetic risk profiles too. (23andMe told me that it does not share customer data with insurance companies and its CEO has said she is not currently open to third-party acquisition offers.) Papageorge told me he could imagine, say, scammers targeting people at risk for Alzheimer’s, just as they often target older people who may fall for a ploy out of confusion. All of us have glitches somewhere in our genome—the question is who will take advantage of that information.

Trump Wins Not Just the White House but His Freedom

The Atlantic

www.theatlantic.com › ideas › archive › 2024 › 11 › trump-wins-not-just-white-house-his-freedom › 680582

Donald Trump’s victory on Tuesday was not just an electoral success but a triumph over the legal system. In the years since reluctantly leaving office in 2021, he has been dogged by four separate criminal prosecutions for his various abuses of power before, during, and after his first term as president. Securing a second term was the simplest way to bring these prosecutions to an end, and now his path to doing so is clear—mostly.

That the country is even facing these questions is evidence of the novel—and frightening—position it now finds itself in. Trump has made history as the first person ever to be elected president with a felony record, having been convicted by a New York jury in May, but not yet sentenced. Additionally, he has been indicted in three other cases in both state and federal court, though these cases have not yet made it to trial, and now may never. An apparent majority of American voters decided that these charges, the bulk of which speak directly to Trump’s willingness to abuse the powers of the presidency and his refusal to acknowledge that the law might apply to him, were not disqualifying when they made their selection for the nation’s highest office. And now, because of their decision, Trump has won the impunity he so craved.

The federal cases are done for. The day after the election, reports began to surface that Special Counsel Jack Smith was already in conversation with the Justice Department about bringing his two prosecutions of Trump—one over his hoarding of classified documents, and one over his efforts to unlawfully hold on to power following the 2020 election—to an end before Trump swears the oath of office for a second time on January 20. If for any reason that doesn’t happen, Trump can simply order those cases dismissed—the Department of Justice answers to the president, after all. The state cases, over which Trump has no such power, are somewhat more of a puzzle. In no instance, however, is the answer satisfying for anyone who cares about seeing Trump brought to justice.

[Conor Friedersdorf: Treat Trump like a normal president]

Both of Smith’s cases had already been seriously weakened—particularly the charges concerning the classified documents. That case should have been the most straightforward. Trump appears to have blatantly ignored the law in taking classified materials with him after leaving office, and then refusing to hand that material back to the federal government when the FBI came knocking. But Smith got extremely unlucky when the case was randomly assigned to  the Trump-appointed Judge Aileen Cannon, who has been hamstringing the prosecution ever since with absurd delay after absurd delay. In July, she capped this off by dismissing the charges altogether, on the legally dubious grounds that Smith had been unconstitutionally appointed. Smith has appealed, leaving the documents case in limbo while the U.S. Court of Appeals for the Eleventh Circuit weighs the arguments.

The other federal case concerns the president-elect’s failed attempt to unlawfully hold on to power after his loss in 2020. In court in Washington, D.C., prosecutors were stopped in their tracks for months while the Supreme Court considered what sort of presidential acts are immune from criminal prosecution. In July, the Court ruled that presidents enjoy extensive immunity for so-called official conduct. Following that, Judge Tanya Chutkan was tasked with figuring out which aspects of the charges might be salvageable, as Trump argued that the entire prosecution should be dismissed because of his newfound immunity. Smith has used the resulting back-and-forth as an opportunity to release material capturing Trump’s culpability: Most damningly, a filing by Smith states that when Trump was alerted on January 6 that a mob of rioters had broken into the Capitol and that then–Vice President Mike Pence’s life was in danger, he responded, “So what?”

Now, with Trump poised to reenter the Oval Office, the January 6 case will never make it to trial, and the Florida prosecution of Trump will never be resurrected. The only question is what precise sequence of events will lead to that outcome. Smith may be aiming to have both cases dismissed before Trump once again resumes the presidency, “to comply with long-standing department policy that a sitting president can’t be prosecuted,” NBC first reported. The reasoning behind Smith’s reported conversations with the Justice Department is not entirely clear: Is the thinking that a trial will never come to pass, so it’s better to simply wind things down now? Or is it that the Justice Department’s prohibition on prosecuting a sitting president somehow also forbids moving forward with a prosecution of a president-elect?

Either way, this approach looks a lot like admitting defeat. The alternative would be for Smith to fight to the end and keep moving forward with the cases until Trump takes office, daring the new president to shut them down.

Such a confrontation could play out in a number of ways. Trump declared in October that he would “fire Smith in two seconds” after coming into office. He could make good on that threat and then order the Justice Department to drop the cases. Or he might even take the constitutionally untested step of pardoning himself. Whatever option he chooses, forcing him to take such a step would make obvious the magnitude and impropriety of Trump’s actions: a president abusing his authority to evade criminal accountability for his own wrongdoing. For all of Trump’s battles with the law, he has never tried to so directly quash a case against himself, even during the Mueller investigation. No president ever has.

When Richard Nixon tried to suppress the Watergate investigation, in 1973, setting in motion a series of Justice Department resignations during the “Saturday Night Massacre” until he managed to dismiss Special Prosecutor Archibald Cox, the ensuing political inferno ultimately led to the end of Nixon’s presidency. There is not the slightest possibility that a dismissal of Smith and of the cases against Trump would have the same outcome—the erosion of political norms over the course of the first Trump presidency has seen to that. But there is still some power in letting Trump write himself into history this way.

The counterpoint, such as there is one, is that winding these cases down before Trump enters office might allow for a fuller public accounting of what exactly the once and future president has done. The Justice Department regulations under which Smith operates provide that, upon completing an investigation, the special counsel must provide a report of his work to the attorney general—who may “determine that public release of these reports would be in the public interest.” That’s the provision under which Robert Mueller wrote his famous report. But the Mueller report was delayed in its release thanks to political chicanery by Trump’s Attorney General Bill Barr—and likewise, there’s no guarantee that a Trump-selected attorney general or acting attorney general would lift a finger to release any Smith report. If Smith wraps up under the Biden administration, in contrast, it’s far more likely that the special counsel might be able to release a final accounting of Trump’s deeds to the public.

[Arash Azizi: Don’t give up on America]

The twist, of course, is that it’s hard to imagine that the same public that just elected this man to the presidency would care. At this point, it’s a truism to say that the legal system is not designed to deal with a criminal president or former president, and that the only solution was a political one—to vote him out. Well so much for that, too. What’s more, Trump will enjoy even greater impunity during his second term, thanks to wording in the Supreme Court’s immunity ruling that seems to sharply limit the ability of any future special counsel to investigate a sitting president—if, that is, the special-counsel system survives Cannon’s ruling.

So that’s it for the federal cases. The state prosecutions represent a somewhat more complicated problem, simply because there’s no easy way for Trump to cleanly do away with them. The president has no authority over state criminal cases. Still, the prognosis is not much better.

In Georgia, the ungainly Fulton County prosecution of Trump and 18 other co-defendants for their effort to steal the 2020 election has been stalled since this summer, following a baffling scandal over the personal conduct of District Attorney Fani Willis. This July, a judge placed the case on hold while Trump pursued Willis’s disqualification from the prosecution—a matter that will come before the Georgia Court of Appeals in early December. If that court agrees that Willis is disqualified, another Georgia prosecutor would be appointed to the case, and would have the option of continuing to pursue the prosecution or dropping it entirely. That may be the end of the case right there.

If Willis survives the litigation, or if her replacement decides to move forward, whoever is leading the case will immediately run into two interrelated problems. The first is the very same Supreme Court immunity decision that has bogged down the federal case. Although that ruling directly concerned the federal charges against Trump over January 6, the conduct at issue in the Georgia indictment is substantially similar, and Trump would have strong arguments that the Court’s decision rules out some or all of the Georgia prosecution. The second problem is that, as the Justice Department has long held and as the immunity decision recognizes, there can be no criminal prosecution—even at the state level—of a sitting president. Trump would have no power to get rid of the case, but state prosecutors couldn’t proceed with it, either.

What then? Might prosecutors seek to somehow place the case on ice and unthaw it when Trump leaves office in 2028? “I think we are in an entirely uncharted territory,” Anthony Michael Kreis of Georgia State University College of Law, who has been following the Fulton County case closely, told me.

That leaves the New York case, in which Trump was already convicted on 34 felony counts in May. That verdict, which involved conduct unrelated to Trump’s official duties as president, should have been safe from the Supreme Court’s interference, but the Court contrived to meddle in the prosecution by inventing a bizarre rule largely prohibiting prosecutors from introducing evidence of official presidential acts, even when prosecuting unshielded private conduct. Trump immediately seized on this to argue that the verdict should be thrown out. As a result, his New York sentencing was delayed until after the election—it is now scheduled for November 26—and Justice Juan Merchan is set to rule on Trump’s immunity motion this coming Tuesday, exactly a week after the election.

Merchan once again finds himself in the unenviable situation of trying to work through how the law ought to apply to a particularly sui generis defendant. If the judge decides against tossing out the verdict and moves forward with sentencing, Trump’s defense lawyers may argue that sentencing should be put on hold until after Trump’s presidency. They could also seek to appeal any adverse immunity ruling in New York state courts and up to a potentially friendly Supreme Court. Trying to sort through what happens next requires traveling down the twists and turns of any number of fractals, but the bottom line is that the far-fetched scenario of a president being sworn in from the inside of a New York prison cell—always unlikely—is not going to occur.

All of this places Merchan in a very strange position. “Obviously the court is trying to proceed as if this is any other case, but it really isn’t,” Rebecca Roiphe, a former prosecutor in the Manhattan district attorney’s office and a professor at New York Law School, told me. But, she said of the New York case and the other Trump prosecutions, “from a perspective of the rule of law, it’s really important to follow it through to the end—even if in the end, it fizzles out.”

[Thomas Chatterton Williams: What the left keeps getting wrong]

Besides Trump, other defendants who participated in his various schemes now have new hope of reprieve. Across the country, state cases outside the president’s control are moving forward against people involved in the 2020 fake-electors plot. Will the new administration attempt to leverage threats or political pressure to push state prosecutors to drop these charges? In Florida, Trump has two co-defendants, men who allegedly helped him hide classified documents from the FBI. Will he pardon them as well? What will happen to the five unindicted co-conspirators whom Jack Smith lists as aiding Trump’s unlawful effort to hold on to power in 2020—might Smith recommend charges against them as well, perhaps forcing Trump to pardon them? Or will they slip away?

And then there are the other January 6 defendants—the people who broke into the Capitol on Trump’s command, and whom he has repeatedly indicated he will pardon upon retaking office. Already, one defendant, Christopher Carnell, has unsuccessfully asked for his federal case to be halted, because he is “expecting to be relieved of the criminal prosecution that he is currently facing when the new administration takes office.” Lawyers for another defendant, Jaimee Avery, put the matter even more plainly in asking to delay her sentencing until after the inauguration: “It would create a gross disparity for Ms. Avery to spend even a day in jail when the man who played a pivotal role in organizing and instigating the events of January 6 will now never face consequences for his role in it.”

Legal arguments aside, they have a point. What moral logic is there to punishing rioters when American voters have decided to grant the instigator of the riot a free pass?