Should Genetic Information About Mental Health Affect Civil Court Cases?
Imagine this scenario: A couple is involved in a heated custody dispute over their only child. As part of the effort to make the case of being a better guardian, one parent goes on a "genetic fishing expedition": this parent obtains a DNA sample from the other parent with the hope that such data will identify some genetic predisposition to a psychiatric condition (e.g., schizophrenia) and tilt the judge's custody decision in his or her favor.
As knowledge of psychiatric genetics is growing, it is likely to be introduced in civil cases, such as child custody disputes and education-related cases, raising a tangle of ethical and legal questions.
This is an example of how "behavioral genetic evidence" -- an umbrella term for information gathered from family history and genetic testing about pathological behaviors, including psychiatric conditions—may in the future be brought by litigants in court proceedings. Such evidence has been discussed primarily when criminal defendants sought to introduce it to make the claim that they are not responsible for their behavior or to justify their request for reduced sentencing and more lenient punishment.
However, civil cases are an emerging frontier for behavioral genetic evidence. It has already been introduced in tort litigation, such as personal injury claims, and as knowledge of psychiatric genetics is growing, it is further likely to be introduced in other civil cases, such as child custody disputes and education-related cases. But the introduction of such evidence raises a tangle of ethical and legal questions that civil courts will need to address. For example: how should such data be obtained? Who should get to present it and under what circumstances? And does the use of such evidence fit with the purposes of administering justice?
How Did We Get Here?
That behavioral genetic evidence is entering courts is unsurprising. Scientific evidence is a common feature of judicial proceedings, and genetic information may reveal relevant findings. For example, genetic evidence may elucidate whether a child's medical condition is due to genetic causes or medical malpractice, and it has been routinely used to identify alleged offenders or putative fathers. But behavioral genetic evidence is different from such other genetic data – it is shades of gray, instead of black and white.
Although efforts to understand the nature and origins of human behavior are ongoing, existing and likely future knowledge about behavioral genetics is limited. Behavioral disorders are highly complex and diverse. They commonly involve not one but multiple genes, each with a relatively small effect. They are impacted by many, yet unknown, interactions between genes, familial, and environmental factors such as poverty and childhood adversity.
And a specific gene variant may be associated with more than one behavioral disorder and be manifested with significantly different symptoms. Thus, biomarkers about "predispositions" for behavioral disorders cannot generally provide a diagnosis or an accurate estimate of whether, when, and at what severity a behavioral disorder will occur. And, unlike genetic testing that can confirm litigants' identity with 99.99% probability, behavioral genetic evidence is far more speculative.
Genetic theft raises questions about whose behavioral data are being obtained, by whom, and with what authority.
Whether judges, jurors, and other experts understand the nuances of behavioral genetics is unclear. Many people over-estimate the deterministic nature of genetics, and under-estimate the role of environments, especially with regards to mental health status. The U.S. individualistic culture of self-reliance and independence may further tilt the judicial scales because litigants in civil courts may be unjustly blamed for their "bad genes" while structural and societal determinants that lead to poor behavioral outcomes are ignored.
These concerns were recently captured in the Netflix series "13 Reasons Why," depicting a negligence lawsuit against a school brought by parents of a high-school student there (Hannah) who committed suicide. The legal tides shifted from the school's negligence in tolerating a culture of bullying to parental responsibility once cross-examination of Hannah's mother revealed a family history of anxiety, and the possibility that Hannah had a predisposition for mental illness, which (arguably) required therapy even in the absence of clear symptoms.
Where Is This Going?
The concerns are exacerbated given the ways in which behavioral genetic evidence may come to court in the future. One way is through "genetic theft," where genetic evidence is obtained from deserted property, such as soft-drink cans. This method is often used for identification purposes such as criminal and paternity proceedings, and it will likely expand to behavioral genetic data once available through "home kits" that are offered by direct-to-consumer companies.
Genetic theft raises questions about whose behavioral data are being obtained, by whom, and with what authority. In the scenario of child-custody dispute, for example, the sequencing of the other parent's DNA will necessarily intrude on the privacy of that parent, even as the scientific value of such information is limited. A parent on a "genetic fishing expedition" can also secretly sequence their child for psychiatric genetic predispositions, arguably, in order to take preventative measures to reduce the child's risk for developing a behavioral disorder. But should a parent be allowed to sequence the child without the other parent's consent, or regardless of whether the results will provide medical benefits to the child?
Similarly, although schools are required, and may be held accountable for failing to identify children with behavioral disabilities and to evaluate their educational needs, some parents may decline their child's evaluation by mental health professionals. Should schools secretly obtain a sample and sequence children for behavioral disorders, regardless of parental consent? My study of parents found that the overwhelming majority opposed imposed genetic testing by school authorities. But should parental preference or the child's best interests be the determinative factor? Alternatively, could schools use secretly obtained genetic data as a defense that they are fulfilling the child-find requirement under the law?
The stigma associated with behavioral disorders may intimidate some people enough that they back down from just claims.
In general, samples obtained through genetic theft may not meet the legal requirements for admissible evidence, and as these examples suggest, they also involve privacy infringement that may be unjustified in civil litigation. But their introduction in courts may influence judicial proceedings. It is hard to disregard such evidence even if decision-makers are told to ignore it.
The costs associated with genetic testing may further intensify power differences among litigants. Because not everyone can pay for DNA sequencing, there is a risk that those with more resources will be "better off" in court proceedings. Simultaneously, the stigma associated with behavioral disorders may intimidate some people enough that they back down from just claims. For example, a good parent may give up a custody claim to avoid disclosure of his or her genetic predispositions for psychiatric conditions. Regulating this area of law is necessary to prevent misuses of scientific technologies and to ensure that powerful actors do not have an unfair advantage over weaker litigants.
Behavioral genetic evidence may also enter the courts through subpoena of data obtained in clinical, research or other commercial genomic settings such as ancestry testing (similar to the genealogy database recently used to identify the Golden State Killer). Although court orders to testify or present evidence are common, their use for obtaining behavioral genetic evidence raises concerns.
One worry is that it may be over-intrusive. Because behavioral genetics are heritable, such data may reveal information not only about the individual litigant but also about other family members who may subsequently be stigmatized as well. And, even if we assume that many people may be willing for their data in genomic databases to be used to identify relatives who committed crimes (e.g., a rapist or a murderer), we can't assume the same for civil litigation, where the public interest in disclosure is far weaker.
Another worry is that it may deter people from participating in activities that society has an interest in advancing, including medical treatment involving genetic testing and genomic research. To address this concern, existing policy provides expanded privacy protections for NIH-funded genomic research by automatically issuing a Certificate of Confidentiality that prohibits disclosure of identifiable information in any Federal, State, or local civil, criminal, and other legal proceedings.
But this policy has limitations. It applies only to specific research settings and does not cover non-NIH funded research or clinical testing. The Certificate's protections can also be waived under certain circumstances. People who volunteer to participate in non-NIH-funded genomic research for the public good may thus find themselves worse-off if embroiled in legal proceedings.
Consider the following: if a parent in a child custody dispute had participated in a genetic study on schizophrenia years earlier, should the genetic results be subpoenaed by the court – and weaponized by the other parent? Public policy should aim to reduce the risks for such individuals. The end of obtaining behavioral genetic evidence cannot, and should not, always justify the means.
This man spent over 70 years in an iron lung. What he was able to accomplish is amazing.
It’s a sight we don’t normally see these days: A man lying prone in a big, metal tube with his head sticking out of one end. But it wasn’t so long ago that this sight was unfortunately much more common.
In the first half of the 20th century, tens of thousands of people each year were infected by polio—a highly contagious virus that attacks nerves in the spinal cord and brainstem. Many people survived polio, but a small percentage of people who did were left permanently paralyzed from the virus, requiring support to help them breathe. This support, known as an “iron lung,” manually pulled oxygen in and out of a person’s lungs by changing the pressure inside the machine.
Paul Alexander was one of several thousand who were infected and paralyzed by polio in 1952. That year, a polio epidemic swept the United States, forcing businesses to close and polio wards in hospitals all over the country to fill up with sick children. When Paul caught polio in the summer of 1952, doctors urged his parents to let him rest and recover at home, since the hospital in his home suburb of Dallas, Texas was already overrun with polio patients.
Paul rested in bed for a few days with aching limbs and a fever. But his condition quickly got worse. Within a week, Paul could no longer speak or swallow, and his parents rushed him to the local hospital where the doctors performed an emergency procedure to help him breathe. Paul woke from the surgery three days later, and found himself unable to move and lying inside an iron lung in the polio ward, surrounded by rows of other paralyzed children.
Hospitals were commonly filled with polio patients who had been paralyzed by the virus before a vaccine became widely available in 1955. Associated Press
Paul struggled inside the polio ward for the next 18 months, bored and restless and needing to hold his breath when the nurses opened the iron lung to help him bathe. The doctors on the ward frequently told his parents that Paul was going to die.But against all odds, Paul lived. And with help from a physical therapist, Paul was able to thrive—sometimes for small periods outside the iron lung.
The way Paul did this was to practice glossopharyngeal breathing (or as Paul called it, “frog breathing”), where he would trap air in his mouth and force it down his throat and into his lungs by flattening his tongue. This breathing technique, taught to him by his physical therapist, would allow Paul to leave the iron lung for increasing periods of time.
With help from his iron lung (and for small periods of time without it), Paul managed to live a full, happy, and sometimes record-breaking life. At 21, Paul became the first person in Dallas, Texas to graduate high school without attending class in person, owing his success to memorization rather than taking notes. After high school, Paul received a scholarship to Southern Methodist University and pursued his dream of becoming a trial lawyer and successfully represented clients in court.
Paul Alexander, pictured here in his early 20s, mastered a type of breathing technique that allowed him to spend short amounts of time outside his iron lung. Paul Alexander
Paul practiced law in North Texas for more than 30 years, using a modified wheelchair that held his body upright. During his career, Paul even represented members of the biker gang Hells Angels—and became so close with them he was named an honorary member.Throughout his long life, Paul was also able to fly on a plane, visit the beach, adopt a dog, fall in love, and write a memoir using a plastic stick to tap out a draft on a keyboard. In recent years, Paul joined TikTok and became a viral sensation with more than 330,000 followers. In one of his first videos, Paul advocated for vaccination and warned against another polio epidemic.
Paul was reportedly hospitalized with COVID-19 at the end of February and died on March 11th, 2024. He currently holds the Guiness World Record for longest survival inside an iron lung—71 years.
Polio thankfully no longer circulates in the United States, or in most of the world, thanks to vaccines. But Paul continues to serve as a reminder of the importance of vaccination—and the power of the human spirit.
““I’ve got some big dreams. I’m not going to accept from anybody their limitations,” he said in a 2022 interview with CNN. “My life is incredible.”
When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”