Science
'We've created medical refugees.' LGBTQ+ healthcare workers fight for gender-affirming care amid rise in anti-trans laws
Nico Olalia had just finished her initial nurse training in the Philippines when she realized her aspirations were growing bigger than her home archipelago.
“There are a lot of trans Filipinos, but they’re always known in the beauty industry, and they’re very seldom found in the professional side,” Olalia said.
So she moved back to the United States, where she was born, for better career prospects. Today, she is a clinical nurse at Cedars-Sinai, one of the largest hospitals in Southern California, where she assists new hires and cares for patients in the neurology division.
Olalia feels like it’s a dream come true; her peers and patients respect her and welcome her contributions. It’s a hope shared by a small but growing number of trans and nonbinary healthcare workers in the U.S.
Yearly surveys of first-year medical students by the Assn. of American Medical Colleges show that the percentage identifying as transgender and gender nonconforming doubled from 0.7% in 2020 to 1.4% in 2023.
These numbers align with the growing LGBTQ+ population in the United States. Today, younger generations are more likely to identify as LGBTQ+ than generations before. A national survey this year found that 28% of Gen Z respondents identified as lesbian, gay, bisexual, transgender or queer.
But that rise in LGBTQ+-identified youths and trans healthcare workers has coincided with escalating restrictions on gender-affirming care.
Between 2022 and 2023, anti-trans legislation proposed across statehouses tripled, with a majority of the bills proposing restrictions on gender-affirming care. According to the Movement Advancement Project, at least half of the states exclude transgender-related healthcare for youths from their Medicaid programs, while only 22 explicitly cover it.
U.S. Assistant Secretary for Health Rachel Levine, center, is shown at a transgender health event in Miami with Tatiana Williams, left, of Transinclusive Group and Arianna Inurritegui-Lint of Arianna’s Center.
(Wilfredo Lee / Associated Press)
“We’ve created medical refugees who have to leave their state to get that care,” said U.S. Assistant Secretary for Health Rachel Levine, the first transgender person confirmed by the Senate to a high government post.
“Transgender medicine can be suicide prevention care. It’s been shown in many studies that it improves the quality of life and can save lives for youth and adults,” said Levine, a pediatrician specializing in adolescent care.
When Levine was doing her medical residency at Mount Sinai Hospital in New York City during the 1980s AIDS crisis, she saw friends and co-workers succumb to the epidemic — an experience that rings eerily familiar to the discrimination she sees transgender people facing today, she said.
One study from 2023 showed that 70% of transgender and gender nonconforming patients faced at least one negative interaction with a healthcare provider, ranging from an “unsolicited harmful opinion about gender identity to physical attacks and abuse.” It was only in 2019 that the World Health Organization removed gender dysphoria from its list of mental health illnesses.
Alex Keuroghlian, a clinical psychologist at Harvard Medical School, directs training programs through the National LGBTQIA+ Health Education Center that educate healthcare providers across the country on gender-affirming care. They’ve noticed a double standard when it comes to the doubts that people raise against transgender healthcare.
“Given how well resourced anti-trans political groups are, it can really distort the public discourse and make it harder to advance evidence-based, clinically sound practices,” Keuroghlian said of the rampant misinformation they’ve seen online.
Mack Allen, an 18-year-old transgender high school student from Leavenworth, Kan., stands with other young advocates of LGBTQ+ rights after a rally at the state capitol in Topeka, Kan.
(John Hanna / Associated Press)
An uptick in the number of transgender-identifying youths seeking gender-affirming care sparked a theory that “social contagion” was influencing teens to experience “rapid-onset gender dysphoria.” Some practitioners oppose this framing, and research published by the American Academy of Pediatrics has disproved it. Both the American Psychiatric Assn. and the American Pediatric Assn. support gender-affirming care for adolescents.
The news on the legal front hasn’t been all bad for trans healthcare providers; last month, a federal court judge struck down Florida’s law restricting gender-affirming care for minors and adults. However, the practice of categorizing gender in a binary medical system continues.
That’s problematic, said Mauricio Dankers, the intensive care unit director at HCA Florida Aventura Hospital, because the medical erasure of trans people can prevent a proper diagnoses. When doctors have to make split-second decisions in the ICU, he said, failing to recognize a transgender person could prevent them from receiving lifesaving care.
“If I don’t know that a transgender woman may have gone through laryngoplasty to change the tone of her voice, I’m going to go and put the breathing tube [and] I may run into trouble,” Dankers offered as an example. Chest binding used by some transgender people to appear more masculine can also lead to pneumonia if done improperly, he said.
Violet Rin, a transgender woman in Florida, gives herself estrogen injections once a week.
(Francine Orr/Los Angeles Times)
Dankers, a gay immigrant who left Peru for the more tolerant New York City, worries that the politicization of transgender healthcare will put a target on LGBTQ+ healthcare providers.
These restrictions “are going to change how the LGBTQ+ trainee thinks about their career,” Dankers said. He said they might think, “I’m not going to a place where they don’t want me by law.”
After Texas banned gender-affirming care for teens, a pediatric endocrinologist closed her practice and moved out of the state because she feared violence from armed protesters. And this year, a Texas man was sentenced to three months in prison for threatening a Boston physician serving transgender patients.
Fear and violence have had a ripple effect even on states that have enshrined transgender healthcare into law.
Baltimore Safe Haven, a nonprofit that provides transitional housing service focused especially on Black trans women, received an increase of 7,000 calls last year after Gov. Wes Moore signed an executive order protecting gender-affirming medical care in Maryland, according to the Baltimore Sun. Most of the callers lived out of state.
Demonstrators gather on the steps to the state capitol to speak against transgender-related bills being considered in the Texas Legislature.
(Eric Gay / Associated Press)
“I can’t even see my own doctor,” said Jules Gill-Peterson, a transgender woman and associate professor at Johns Hopkins University in Baltimore who studies the history of transgender medicine. Anecdotally, she’s heard of doctors’ caseloads tripling with the slew of requests they receive from new transgender patients.
“It’s only going to put greater pressure on [the] system as people migrate from states where it’s illegal to transition medically to states where it’s not,” Gill-Peterson said.
LGBTQ+ healthcare workers are on the defensive, said Kate Steinle, a queer nurse and chief clinical officer at Folx, a nationwide healthcare provider that serves transgender and queer patients.
“Our general counsel wakes up in the morning and is looking at every single possible legislation that could affect our care,” Steinle said. Folx lobbies the government to ensure that its patients have access to gender-affirming care, but Steinle said fighting anti-trans legislation can sometimes feel like “a game of whack-a-mole” — as one goes down, another takes its place.
Anti-trans legislation is largely symbolic because most of these bills fail, said D Dangaran, a lawyer and director of gender justice at Rights Behind Bars. According to the Trans Legislation Tracker, of the 617 bills introduced, 44 have passed, 348 failed and the rest are pending.
But the fate of transgender healthcare could shift dramatically depending on the outcome of the presidential election in November.
“A Trump presidency will signal to the states another possibility to move forward on all fronts with anti-trans legislation,” Dangaran said. Former President Trump has promised to end gender-affirming care for minors if he wins, and Dangaran anticipates that he would sign “executive orders that are antithetical to protecting trans rights.”
Glenda Starke wears a transgender flag as a counterprotest during a rally in favor of a bill to ban gender-affirming care at the Missouri Capitol in Jefferson City, Mo.
(Charlie Riedel / Associated Press)
Keuroghlian worries that many career government employees in the Department of Health and Human Services could be ousted by political appointees as part of Trump’s ambition to reshape the federal workforce. “There is a lot of important healthcare and research funded by the federal government,” he said.
All of this could reverse the progress that the Biden administration has done to advance gender-affirming care across the country.
“There hasn’t been any president that has more explicitly supported access to gender-affirming care,” said Elana Redfield, the federal policy director at the Williams Institute at UCLA School of Law.
Last week, the Supreme Court agreed to consider the Biden administration’s challenge to Tennessee’s ban on gender-affirming care for teens. The administration argues that the ban violates the 14th amendment’s equal protection clause. A ruling is expected next year that could cement or further erode transgender rights.
Redfield warns that “people who are multiply marginalized are also most affected by these laws,” particularly people of color who live in the Deep South. Beyond the legal restrictions to care, they face problems affording the cost of procedures such as gender-affirming surgery and traveling to where care is available, she said.
Nor can lower-income transgender people afford Folx, a private subscription service that charges $39.99 a month on top of any out-of-pocket costs and co-pays levied by an insurer.
“Trans people have a lot to tell us about just how bad U.S. healthcare can get,” Gill-Peterson said. “Trans healthcare is not really that different than the rest of healthcare.”
People attend a rally as part of a Transgender Day of Visibility on March 31, 2023, by the U.S. Capitol in Washington.
(Jacquelyn Martin / Associated Press)
Increasing the representation of transgender people in a healthcare system where “profit is placed over people” won’t solve those fundamental inequities, she said. Even if doctors support their transgender patients, Gill-Peterson said, they are still bound by law to follow state regulations and insurers’ dictates.
On the other hand, studies have linked positive health outcomes in LGBTQ+ patients and patients of color to having a healthcare provider who shares their background. That’s one reason University of Michigan medical student Gaines Blasdel, a trans man, wants to become a urologist who can provide gender-affirming surgery to transgender patients such as himself.
Blasdel said gender-affirming care can be an abstract social justice issue to his cisgender classmates, but it isn’t to him. “I’ve been embedded [in medicine] and I’m going to be, no matter how hard it is.”
Jona Tanguay, a physician assistant and medical lead in the medical substance use disorder programs at Whitman-Walker Health in Washington, D.C., said it’s important not to discredit the incremental but meaningful progress in the representation and quality of care offered to transgender people.
“Progress isn’t always linear,” they said. Tanguay, who is nonbinary, is also the president of GLMA, formerly known as the Gay and Lesbian Medical Assn. They already see the curriculum expanding and the number of out transgender healthcare providers growing steadily. “Every generation after is going to be more self-aware than they used to be about health disparities.”
Nico Olalia, a transgender woman, moved back to the United States from the Philippines for better career opportunities as a nurse.
(Jireh Deng / Los Angeles Times)
Olalia said her story demonstrates that trans people can practice medicine just as well as their cisgender colleagues. Because she’s also enrolled full time in a nursing doctoral program, her days start at 4:30 a.m., when she wakes up to prepare for her 10- to 12-hour shifts. Her efforts at Cedars-Sinai earned her a prestigious $10,000 no-strings-attached grant from the Simms/Mann Institute & Foundation.
“I do hope that I can have more power to inspire transgender women,” Olalia said. “I want those who are walking behind me to … have that opportunity to go beyond what they’re told to do or what society deems them to be.”
Science
Southern California mountain lions recommended for threatened status
The California Department of Fish and Wildlife has recommended granting threatened species status to roughly 1,400 mountain lions roaming the Central Coast and Southern California, pointing to grave threats posed by freeways, rat poison and fierce wildfires.
The determination, released Wednesday, is not the final say but signals a possibility that several clans of the iconic cougars will be listed under the California Endangered Species Act.
It’s a move that supporters say would give the vulnerable animals a chance at recovery, but detractors have argued would make it harder to get rid of lions that pose a safety risk to people and livestock.
The recommendation was “overdue,” Charlton Bonham, director of the state wildlife department, said during a California Fish and Game Commission meeting.
It arrives about six years after the Center for Biological Diversity and Mountain Lion Foundation petitioned the commission to consider listing a half-dozen isolated lion populations that have suffered from being hit by cars, poisoned by rodenticides and trapped by development.
The following year, in 2020 the Commission found the request might be warranted, giving the lions temporary endangered species protections as “candidates” for listing. It also prompted the state wildlife department to put together a report to inform the commission’s final decision.
The next step is for state wildlife commissioners to to vote on the protections, possibly in February.
Brendan Cummings, conservation director for Center for Biological Diversity, hailed the moment as “a good day, not just for mountain lions, but for Californians.”
If the commissioners adopt the recommendation, as he believes they will, then the “final listing of the species removes any uncertainty about the state’s commitment to conserving and recovering these ecologically important, charismatic and well-loved species that are so much a part of California.”
The report recommends listing lions “in an area largely coinciding” with what the petitioners requested, which includes the Santa Ana, San Gabriel, San Bernardino, Santa Monica, Santa Cruz and Tehachapi mountains.
It trims off portions along the northern and eastern borders of what was proposed, including agricultural lands in the Bay Area and a southeastern portion of desert — areas where state experts had no records of lions, according to Cummings.
Officials in the report note that most of the lion groups proposed for listing are contending with a lack of gene flow because urban barriers keep them from reaching one another.
In Southern California, lions have shown deformities from inbreeding, including kinked tails and malformed sperm. There’s an almost 1 in 4 chance, according to research, that mountain lions could become extinct in the Santa Monica and Santa Ana mountains within 50 years.
The late P-22 — a celebrity mountain lion that inhabited Griffith Park – personified the tribulations facing his kind. Rat poison and car collisions battered him from the inside out. He was captured and euthanized in late 2022, deemed too sick to return to the wild because of injuries and infection.
For some species, protections come in the form of stopping chainsaws or bulldozers. But imperiled lions, Cummings said, need their habitats stitched together in the form of wildlife crossings — such as the gargantuan one being built over the 101 Freeway in Agoura Hills. He added that developments that could restrict their movement should get more scrutiny under the proposed protections.
Critics of the effort to list lion populations have said that it will stymie residential and commercial projects.
California is home to roughly 4,170 mountain lions, according to the recent report, but not all are equal in their struggle.
Many lion populations, particularly in northwest coastal forests, are hearty and healthy.
Protections are not being sought for those cats. Some, in fact, would like to see their numbers reduced amid some high-profile conflicts.
Bonham, the director of the state Department of Fish and Wildlife, spoke to concerns about public safety at the recent meeting, alluding to the tragic death of young man who was mauled by a cougar last year in Northern California.
“These are really delicate issues and the conversation I know in the coming years is going to have to grapple with all that,” said Bonham, who will be stepping down this month after nearly 15 years in his role.
California’s lions already enjoy certain protections. In 1990, voters approved a measure that designated them a “specially protected species” and banned hunting them for sport.
Science
California’s last nuclear plant clears major hurdle to power on
California environmental regulators on Thursday struck a landmark deal with Pacific Gas & Electric to extend the life of the state’s last remaining nuclear power plant in exchange for thousands of acres of new land conservation in San Luis Obispo County.
PG&E’s agreement with the California Coastal Commission is a key hurdle for the Diablo Canyon nuclear plant to remain online until at least 2030. The plant was slated to close this year, largely due to concerns over seismic safety, but state officials pushed to delay it — saying the plant remains essential for the reliable operation of California’s electrical grid. Diablo Canyon provides nearly 9% of the electricity generated in the state, making it the state’s single largest source.
The Coastal Commission voted 9-3 to approve the plan, settling the fate of some 12,000 acres that surround the power plant as a means of compensation for environmental harm caused by its continued operation.
Nuclear power does not emit greenhouse gases. But Diablo Canyon uses an estimated 2.5 billion gallons of ocean water each day to absorb heat in a process known as “once-through cooling,” which kills an estimated two billion or more marine organisms each year.
Some stakeholders in the region celebrated the conservation deal, while others were disappointed by the decision to trade land for marine impacts — including a Native tribe that had hoped the land would be returned to them. Diablo Canyon sits along one of the most rugged and ecologically rich stretches of the California coast.
Under the agreement, PG&E will immediately transfer a 4,500-acre parcel on the north side of the property known as the “North Ranch” into a conservation easement and pursue transfer of its ownership to a public agency such as the California Department of Parks and Recreation, a nonprofit land conservation organization or tribe. A purchase by State Parks would result in a more than 50% expansion of the existing Montaña de Oro State Park.
PG&E will also offer a 2,200-acre parcel on the southern part of the property known as “Wild Cherry Canyon” for purchase by a government agency, nonprofit land conservation organization or tribe. In addition, the utility will provide $10 million to plan and manage roughly 25 miles of new public access trails across the entire property.
“It’s going to be something that changes lives on the Central Coast in perpetuity,” Commissioner Christopher Lopez said at the meeting. “This matters to generations that have yet to exist on this planet … this is going to be a place that so many people mark in their minds as a place that transforms their lives as they visit and recreate and love it in a way most of us can’t even imagine today.”
Critically, the plan could see Diablo Canyon remain operational much longer than the five years dictated by Thursday’s agreement. While the state Legislature only authorized the plant to operate through 2030, PG&E’s federal license renewal would cover 20 years of operations, potentially keeping it online until 2045.
Should that happen, the utility would need to make additional land concessions, including expanding an existing conservation area on the southern part of the property known as the “South Ranch” to 2,500 acres. The plan also includes rights of first refusal for a government agency or a land conservation group to purchase the entirety of the South Ranch, 5,000 acres, along with Wild Cherry Canyon — after 2030.
Pelicans along the concrete breakwater at Pacific Gas and Electric’s Diablo Canyon Power Plant
(Brian van der Brug/Los Angeles Times)
Many stakeholders were frustrated by the carve-out for the South Ranch, but still saw the agreement as an overall victory for Californians.
“It is a once in a lifetime opportunity,” Sen. John Laird (D-Santa Cruz) said in a phone call ahead of Thursday’s vote. “I have not been out there where it has not been breathtakingly beautiful, where it is not this incredible, unique location, where you’re not seeing, for much of it, a human structure anywhere. It is just one of those last unique opportunities to protect very special land near the California coast.”
Others, however, described the deal as disappointing and inadequate.
That includes many of the region’s Native Americans who said they felt sidelined by the agreement. The deal does not preclude tribal groups from purchasing the land in the future, but it doesn’t guarantee that or give them priority.
The yak titʸu titʸu yak tiłhini Northern Chumash Tribe of San Luis Obispo County and Region, which met with the Coastal Commission several times in the lead-up to Thursday’s vote, had hoped to see the land returned to them.
Scott Lanthrop is a member of the tribe’s board and has worked on the issue for several years.
“The sad part is our group is not being recognized as the ultimate conservationist,” he told The Times. “Any normal person, if you ask the question, would you rather have a tribal group that is totally connected to earth and wind and water, or would you like to have some state agency or gigantic NGO manage this land, I think the answer would be, ‘Hey, you probably should give it back to the tribe.’”
Tribe chair Mona Tucker said she fears that free public access to the land could end up harming it instead of helping it, as the Coastal Commission intends.
“In my mind, I’m not understanding how taking the land … is mitigation for marine life,” Tucker said. “It doesn’t change anything as far as impacts to the water. It changes a lot as far as impacts to the land.”
Montaña de Oro State Park.
(Christopher Reynolds / Los Angeles Times)
The deal has been complicated by jurisdictional questions, including who can determine what happens to the land. While PG&E owns the North Ranch parcel that could be transferred to State Parks, the South Ranch and Wild Cherry Canyon are owned by its subsidiary, Eureka Energy Company.
What’s more, the California Public Utilities Commission, which regulates utilities such as PG&E, has a Tribal Land Transfer Policy that calls for investor-owned power companies to transfer land they no longer want to Native American tribes.
In the case of Diablo Canyon, the Coastal Commission became the decision maker because it has the job of compensating for environmental harm from the facility’s continued operation. Since the commission determined Diablo’s use of ocean water can’t be avoided, it looked at land conservation as the next best method.
This “out-of-kind” trade-off is a rare, but not unheard of way of making up for the loss of marine life. It’s an approach that is “feasible and more likely to succeed” than several other methods considered, according to the commission’s staff report.
“This plan supports the continued operation of a major source of reliable electricity for California, and is in alignment with our state’s clean energy goals and focus on coastal protection,” Paula Gerfen, Diablo Canyon’s senior vice president and chief nuclear officer, said in a statement.
But Assemblymember Dawn Addis (D-Morro Bay) said the deal was “not the best we can do” — particularly because the fate of the South Ranch now depends on the plant staying in operation beyond 2030.
“I believe the time really is now for the immediate full conservation of the 12,000 [acres], and to bring accountability and trust back for the voters of San Luis Obispo County,” Addis said during the meeting.
There are also concerns about the safety of continuing to operate a nuclear plant in California, with its radioactive waste stored in concrete casks on the site. Diablo Canyon is subject to ground shaking and earthquake hazards, including from the nearby Hosgri Fault and the Shorline Fault, about 2.5 miles and 1 mile from the facility, respectively.
PG&E says the plant has been built to withstand hazards. It completed a seismic hazard assessment in 2024, and determined Diablo Canyon is safe to continue operation through 2030. The Coastal Commission, however, found if the plant operates longer, it would warrant further seismic study.
A key development for continuing Diablo Canyon’s operation came in 2022 with Senate Bill 846, which delayed closure by up to five additional years. At the time, California was plagued by rolling blackouts driven extreme heat waves, and state officials were growing wary about taking such a major source of power offline.
But California has made great gains in the last several years — including massive investments in solar energy and battery storage — and some questioned whether the facility is still needed at all.
Others said conserving thousands of acres of land still won’t make up for the harms to the ocean.
“It is unmitigatable,” said David Weisman, executive director of the nonprofit Alliance for Nuclear Responsibility. He noted that the Coastal Commission’s staff report says it would take about 99 years to balance the loss of marine life with the benefits provided by 4,500 acres of land conservation. Twenty more years of operation would take about 305 years to strike that same balance.
But some pointed out that neither the commission nor fisheries data find Diablo’s operations cause declines in marine life. Ocean harm may be overestimated, said Seaver Wang, an oceanographer and the climate and energy director at the Breakthrough Institute, a Berkeley-based research center.
In California’s push to transition to clean energy, every option comes with downsides, Wang said. In the case of nuclear power — which produces no greenhouse gas emissions — it’s all part of the trade off, he said.
“There’s no such thing as impacts-free energy,” he said.
The Coastal Commission’s vote is one of the last remaining obstacles to keeping the plant online. PG&E will also need a final nod from the Regional Water Quality Control Board, which decides on a pollution discharge permit in February.
The federal Nuclear Regulatory Commission will also have to sign off on Diablo’s extension.
Science
In search for autism’s causes, look at genes, not vaccines, researchers say
Earlier this year, Health and Human Services Secretary Robert F. Kennedy Jr. pledged that the search for autism’s cause — a question that has kept researchers busy for the better part of six decades — would be over in just five months.
“By September, we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures,” Kennedy told President Trump during a Cabinet meeting in April.
That ambitious deadline has come and gone. But researchers and advocates say that Kennedy’s continued fixation on autism’s origins — and his frequent, inaccurate claims that childhood vaccines are somehow involved — is built on fundamental misunderstandings of the complex neurodevelopmental condition.
Even after more than half a century of research, no one yet knows exactly why some people have autistic traits and others do not, or why autism spectrum disorder looks so different across the people who have it. But a few key themes have emerged.
Researchers believe that autism is most likely the result of a complex set of interactions between genes and the environment that unfold while a child is in the womb. It can be passed down through families, or originate with a spontaneous gene mutation.
Environmental influences may indeed play a role in some autism cases, but their effect is heavily influenced by a person’s genes. There is no evidence for a single trigger that causes autism, and certainly not one a child encounters after birth: not a vaccine, a parenting style or a post-circumcision Tylenol.
“The real reason why it’s complicated, the more fundamental one, is that there’s not a single cause,” said Irva Hertz-Picciotto, a professor of public health science and director of the Environmental Health Sciences Center at UC Davis. “It’s not a single cause from one person to the next, and not a single cause within any one person.”
Kennedy, an attorney who has no medical or scientific training, has called research into autism’s genetics a “dead end.” Autism researchers counter that it’s the only logical place to start.
“If we know nothing else, we know that autism is primarily genetic,” said Joe Buxbaum, a molecular neuroscientist who directs the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai. “And you don’t have to actually have the exact genes [identified] to know that something is genetic.”
Some neurodevelopment disorders arise from a difference in a single gene or chromosome. People with Down syndrome have an extra copy of chromosome 21, for example, and Fragile X syndrome results when the FMR1 gene isn’t expressed.
Autism in most cases is polygenetic, which means that multiple genes are involved, with each contributing a little bit to the overall picture.
Researchers have found hundreds of genes that could be associated with autism; there may be many more among the roughly 20,000 in the human genome.
In the meantime, the strongest evidence that autism is genetic comes from studies of twins and other sibling groups, Buxbaum and other researchers said.
The rate of autism in the U.S. general population is about 2.8%, according to a study published last year in the journal Pediatrics. Among children with at least one autistic sibling, it’s 20.2% — about seven times higher than the general population, the study found.
Twin studies reinforce the point. Both identical and fraternal twins develop in the same womb and are usually raised in similar circumstances in the same household. The difference is genetic: identical twins share 100% of their genetic information, while fraternal twins share about 50% (the same as nontwin siblings).
If one fraternal twin is autistic, the chance that the other twin is also autistic is about 20%, or about the same as it would be for a nontwin sibling.
But if one in a pair of identical twins is autistic, the chance that the other twin is also autistic is significantly higher. Studies have pegged the identical twin concurrence rate anywhere from 60% to 90%, though the intensity of the twins’ autistic traits may differ significantly.
Molecular genetic studies, which look at the genetic information shared between siblings and other blood relatives, have found similar rates of genetic influence on autism, said Dr. John Constantino, a professor of pediatrics, psychiatry and behavioral sciences at the Emory University School of Medicine and chief of behavioral and mental health at Children’s Healthcare of Atlanta.
Together, he said, “those studies have indicated that a vast share of the causation of autism can be traced to the effects of genetic influences. That is a fact.”
Buxbaum compares the heritability of autism to the heritability of height, another polygenic trait.
“There’s not one gene that’s making you taller or shorter,” Buxbaum said. Hundreds of genes play a role in where you land on the height distribution curve. A lot of those genes run in families — it’s not unusual for very tall people, for example, to have very tall relatives.
But parents pass on a random mix of their genes to their children, and height distribution across a group of same-sex siblings can vary widely. Genetic mutations can change the picture. Marfan syndrome, a condition caused by mutations in the FBN1 gene, typically makes people grow taller than average. Hundreds of genetic mutations are associated with dwarfism, which causes shorter stature.
Then once a child is born, external factors such as malnutrition or disease can affect the likelihood that they reach their full height potential.
So genes are important. But the environment — which in developmental science means pretty much anything that isn’t genetics, including parental age, nutrition, air pollution and viruses — can play a major role in how those genes are expressed.
“Genetics does not operate in a vacuum, and at the same time, the impact of the environment on people is going to depend on a person’s individual genetics,” said Brian K. Lee, a professor of epidemiology and biostatistics at Drexel University who studies the genetics of developmental disorders.
Unlike the childhood circumstances that can affect height, the environmental exposures associated with autism for the most part take place in utero.
Researchers have identified multiple factors linked to increased risks of the disorder, including older parental age, infant prematurity and parental exposure to air pollution and industrial solvents.
Investigations into some of these linkages were among the more than 50 autism-related studies whose funding Kennedy has cut since taking office, a ProPublica investigation found. In contrast, no credible study has found links between vaccines and autism — and there have been many.
One move from the Department of Health and Human Services has been met with cautious optimism: even as Kennedy slashed funding to other research projects, the department in September announced a $50-million initiative to explore the interactions of genes and environmental factors in autism, which has been divided among 13 different research groups at U.S. universities, including UCLA and UC San Diego.
The department’s selection of well-established, legitimate research teams was met with relief by many autism scientists.
But many say they fear that such decisions will be an anomaly under Kennedy, who has repeatedly rejected facts that don’t conform to his preferred hypotheses, elevated shoddy science and muddied public health messaging on autism with inaccurate information.
Disagreements are an essential part of scientific inquiry. But the productive ones take place in a universe of shared facts and build on established evidence.
And when determining how to spend limited resources, researchers say, making evidence-based decisions is vital.
“There are two aspects of these decisions: Is it a reasonable expenditure based on what we already know? And if you spend money here, will you be taking money away from HHS that people are in desperate need of?” Constantino said. “If you’re going to be spending money, you want to do that in a way that is not discarding what we already know.”
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