Should Police Detectives Have Total Access to Public Genetic Databases?
This past April, an alleged serial rapist and murderer, who had remained unidentified for over 40 years, was located by comparing a crime scene DNA profile to a public genetic genealogy database designed to identify biological relatives and reconstruct family trees. The so-called "Golden State Killer" had not placed his own profile in the database.
Forensic use of genetic genealogy data is possible thanks to widening public participation in direct-to-consumer recreational genetic testing.
Instead, a number of his distant genetic cousins had, resulting in partial matches between themselves and the forensic profile. Investigators then traced the shared heritage of the relatives to great-great-great-grandparents and using these connections, as well as other public records, narrowed their search to just a handful of individuals, one of whom was found to be an exact genetic match to the crime scene sample.
Forensic use of genetic genealogy data is possible thanks to widening public participation in direct-to-consumer recreational genetic testing. The Federal Bureau of Investigation maintains a national forensic genetic database (which currently contains over 16 million unique profiles, over-representing individuals of non-European ancestry); each profile holds genetic information from only 13 to 20 variable gene regions, just enough to identify a suspect. However, since this database and related forensic databases were established, the nature of genetic profiling has significantly changed: direct-to-consumer genetic tests routinely use whole genome scans involving simultaneous analysis of hundreds of thousands of variants.
With such comprehensive genetic information, it becomes possible to discern more distant genetic relatives. Thus, even though public DNA collections are smaller than most law enforcement databases, the potential to connect a crime scene sample to biological relatives is enhanced. The successful use of one genealogy database (GEDMatch) in the GSK case demonstrates the power of the approach, so much so that the genetic profiles of over 100 similar cold cases are now being run through the same resource. Indeed, in the two months since the GSK case was first reported, 5 other cold cases have been solved using similar methods.
Autonomy in the Genomic Age
While few would disagree with the importance of finally bringing to justice those who commit serious violent offenses, this new forensic genetic application has sparked broad discussion of privacy-related and ethical concerns. Before, the main genetic databases accessible to the police were those containing the profiles of accused or convicted criminals, but now the DNA of many more "innocent bystanders," across multiple generations, are in play.
The genetic services that provide a venue for data sharing typically warn participants that their information can be used for purposes beyond those they intend, but there is no legal prohibition on the use of crowd-sourced public collections for forensic investigation. Some services, such as GEDMatch, now explicitly welcome possible law enforcement use.
The decisions of individuals to contribute their own genetic information inadvertently exposes many others across their family tree.
The implication is that consumers must choose for themselves whether they are willing to bring their genetic information into the public sphere. Many have no problem doing so, seeing value in law enforcement access to such data. But the decisions of individuals to contribute their own genetic information inadvertently exposes many others across their family tree who may not be aware of or interested in their genetic relationships going public.
As one well-known statistical geneticist who predicted forensic uses of public genetic data noted: "You are a beacon who illuminates 300 people around you." By the same token, 300 people, most of whom you do not know and have probably never met, can illuminate your genetic information; indeed a recent analysis has suggested that most in the U.S. are identifiable in this way. There is nothing that you can do about it, no way to opt out. Thus, police interaction with such databases must be addressed as a public policy issue, not left to the informed consent of individual consumers.
When Consent Will Not Suffice
For those concerned by the broader implications of such practices, the simplest solution might be to discourage open access sharing of detailed genetic information. But let's say that we are willing to continue to allow those with an interest in genealogy to make their data readily searchable. What safeguards should we implement to ensure that the family members who don't want to opt in, or who don't have the ability to make that choice, remain unharmed? Their autonomy counts, too.
We might consider regulation similar to the kind that limit law enforcement use of forensic genetic databases of convicted and arrested individuals. For example, in California, familial searches can only be performed using the database of convicted individuals in cases of serious crimes with public safety implications where all other investigatory methods have been exhausted, and where single-source high-quality DNA is available for analysis. Further, California policy separates the genealogical investigative team from local detectives, so as to minimize the impact of incidental findings (such as unexpected non-paternity).
Importantly, the individual apprehended was not the first, or even second, but the third person subjected to enhanced police scrutiny.
No such regulations currently govern law enforcement searches of public genealogical databases, and we know relatively little about the specifics of the GSK investigation. We do not know the methods used to infer genetic relationships, or their likelihood of mistakenly suggesting a relationship where none exists. Nor do we know the level of genetic identity considered relevant for subsequent follow-up. It is also unclear how law enforcement investigators combined the genetic information they received with other public records data. Together, this leaves room for an unknown degree of investigation into an unknown number of individuals.
Why This Matters
What has been revealed is that the GSK search resulted in the identification of 10 to 20 potential distant genetic relatives, which led to the investigation of 25 different family trees, 24 of which did not contain the alleged serial rapist and murderer. While some sources described a pool of 100 possible male suspects identified from this exercise, others imply that the total number of relatives encompassed by the investigation was far larger. One account, for example, suggests that there were roughly 1000 family members in just the one branch of the genealogy that included the alleged perpetrator. Importantly, the individual apprehended was not the first, or even second, but the third person subjected to enhanced police scrutiny: reports describe at least two false leads, including one where a warrant was issued to obtain a DNA sample.
These details, many of which only came to light after intense press coverage, raise a host of concerns about the methods employed and the degree to which they exposed otherwise innocent individuals to harms associated with unjustified privacy intrusions. Only with greater transparency and oversight will we be able to ensure that the interests of people curious about their family tree do not unfairly impinge on those of their mostly law-abiding near and distant genetic relatives.
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.”