By: Dana Barnes
Andrea Beleno would rather be doing most anything else than meeting at Austin’s Cherrywood Coffeehouse on President’s Day to tell how, as she sees it, the State of Texas flat-out stole her son’s DNA. With a career in nonprofit legal services, Andrea sees herself more as an advocate for others, not as an activist. Still, as her son Joaquin does his parka-toddler walk through the café courtyard with his fake Blackberry, she outlines how it all went down, blending one-part concerned mom with one-part sound-bite-savvy lawyer.
Before he became a DNA privacy poster child, Joaquin was just like any other child born in Texas since 2002. When hospital staff pricked his heel shortly after birth in 2008, the childhood disease-testing factory began processing his blood. Five droplets landed on the circles of a special DNA-preserving filter paper. (See sample above.) His pediatrician repeated the test a few weeks later. Two spots on each card were used for the kinds of time-sensitive testing few people argue against, for life-threatening disorders as well as phenylketonuria (PKU), which can lead to brain damage if untreated. The state, which began its infant testing program in 1963, now screens for 29 disorders. But what happened to Joaquin’s other three blood drops? Andrea certainly didn’t ask while in the hospital. Foggy from pain meds, she doesn’t remember much about the three days there. Later, at the pediatrician’s office, she heard the “no news is good news” reassurance about the testing and forgot about it.
In fact, Andrea and her father-in-law, civil rights attorney Jim Harrington, didn’t even consider the leftover blood spots until early 2009 when the medical reporter at The Austin American-Statesman uncovered the state program to collect baby DNA. The paper’s report was a shock to the two of them: For almost seven years, the state had been taking the blood of most newborns in Texas — and storing it without parental consent — for “possible use in medical research.”
Incredulous, Andrea and Jim didn’t just grouse to friends and family. With Andrea as lead plaintiff, the Texas Civil Rights Project filed suit against the Texas Department of State Health Services and the Texas A&M Health Science Center, which had stored the samples since 2005. The suit charged the state with violating the children’s Fourth and 14th Amendment rights, conducting unlawful search and seizure, and violating their privacy rights by collecting and indefinitely storing the cards without consent. Andrea and Jim’s group wasn’t the first to sue over infant blood sample collection — Minnesotans were — but the Texans were the first to win a settlement, and in surprisingly rapid time, by Christmas 2009.
The settlement, which included no financial payoff for the plaintiffs, ordered the state to destroy more than five million samples of baby DNA taken over a seven-year period and to disclose how the samples were used. Afterwards, Dr. Nancy Dickey, president of the Texas A&M Health Science Center and vice chancellor for health affairs of the Texas A&M System, lamented the loss of “a superb database” with the power to illuminate the causes of congenital birth defects. But the Texas Legislature, realizing they had a potential problem, acted quickly.
Even before the settlement, legislators voted overwhelmingly to require notification and allow parents to opt-out of the post-screening testing program. Since mid-2009, when the state was required by the new law to give new parents a disclosure form, only 7 percent have chosen to opt out of the program. For parents who want to support medical research that might come from the spots, the health department’s website offers reassurance that blood samples given to researchers are “de-identified” so that recipients “cannot trace the specimen back to the baby from which it came.”
Texas had 120 days after the agreement to destroy any infant blood samples in storage before May 27, 2009, unless given written parental consent to save them. The state was not, however, required to announce when the destruction would take place. As it turns out, while Andrea was enjoying her yerba maté and Sol Taco last February 15, two-and-a-half semi-trucks of 5.3 million infant blood spot samples left A&M’s storage facility in College Station and the Texas State Health Department lab in Austin on their way to a medical incineration facility in the small town of Anahuac, near Houston. There, the samples were quietly, and without publicity, burned some time later.
This story goes beyond Andrea and the four other Texas families that filed suit against the state over the clandestine program. It gets to the heart of DNA. Who owns it? Who can access it? What does it reveal about us? How could it be used against us? What do scientists get out of our blood discards anyway? Beleno et al v. Texas Department of State Health Services et al and its aftermath is the latest skirmish in the age-old battle between privacy rights and the public interest. It’s also (depending on which blogger is arguing) a modern-day case study of duplicitous government or ignorant anti-science extremism. As it turns out, the court settlement was far from the end of the story, with the military in a last-minute role.
Science writer Rebecca Skloot isn’t shy about saying in public that the Texas settlement was “huge.” She knows. She spent 10 years covering the story of a dying woman’s cells taken without consent nearly 60 years ago. The resulting cell line is still reaping rewards for medical researchers. It might surprise the average person, but according to Rebecca’s bestseller, The Immortal Life of Henrietta Lacks, most Americans today have tissue on file somewhere. It’s just that Henrietta’s cells have proven more powerful than average.
Henrietta Lacks, a poor black tobacco farmer, died in 1951 of an aggressive cervical cancer. Her doctor gave some of her cancerous tissue from a biopsy to a researcher to see if it would grow in a culture, a common practice at the time that was usually unsuccessful. But Henrietta’s cells multiplied like mad, providing generations of scientists with cellular powerhouses that helped develop screening and treatment breakthroughs for cancer, polio, and sexually transmitted diseases. They were even sent on the space program’s earliest missions to understand how cells operate in zero gravity. Known as HeLa for her first and last names, these cells have become both foundation and lore in the medical community. They are also a big business. Rebecca says the now multibillion-dollar HeLa industry sells vials of these cells — pieces of a woman who never consented to anything but a medical procedure — to the research community for sums ranging from $200 to $10,000.
In her book, Rebecca writes about the shock most people experience when they learn about Henrietta. “When I tell people the story of Henrietta Lacks and her cells, their first question is usually Wasn’t it illegal for doctors to take Henrietta’s cells without her knowledge? Don’t doctors have to tell you when they use your cells in research? The answer is no — not in 1951, and not in 2009, when this book went to press.” Rebecca tells the story of a man who sued his former doctor in the 1980s for trying to patent cells from his spleen, which was removed due to leukemia. The case finally ended up in the Supreme Court of California, which ruled that the patient had no rights to the tissues after they left his body. She cites another case in 2005 over the rights to prostate cancer samples stored in a tissue bank at Washington University. Courts ended up ruling for the research institution, not the patient. That’s why the Texas settlement — and the order to destroy the samples — is significant.
DNA identity testing pioneer Art Eisenberg is baffled by the Texas parents’ case. These blood spots, he says, are the best DNA source for solving missing persons cases, providing what he repeatedly, if hesitantly, calls “closure” for parents. Art is director of the University of North Texas Center for Human Identification at the Health Science Center. When he hears the samples have been destroyed, he shakes his head and calls it “a travesty.”
“Let’s say you went missing and they can’t find your family,” he says as a way of personalizing the DNA issue. Or, “if you’ve been murdered.” This is when his lab steps in, matching DNA samples to identify the remains and possibly catch a criminal. Direct matches are the best. That’s where the infant blood spot card comes in. If preserved well, the blood spots provide the most direct link to the missing person. When close family members cannot be located to provide a cheek swab, his lab “suggests” to law enforcement that an infant blood spot card would be the best reference sample. For whatever reason, they rarely receive the cards. Sometimes, they just can’t be found.
When they do receive them, the blood spot samples come in as “punches” with only the material needed for identification. Security measures set up through the FBI’s CODIS — or Combined DNA Index System — provide for a tightly protected local database that feeds a national database with less detailed information.
Although Art focuses on identifying missing persons, examining only the slice of data he needs, he understands the privacy risks of DNA research. “Let’s say I get a blood card or a spot, a tiny piece of paper with your blood on it, no name — for whatever reason, one of your siblings or your parents are in a database — theoretically, I could identify you even though that card was given to me in an anonymous [way],” he says, “but that’s not specifically what we do.”
Art leisurely discusses the science of DNA, the intrigue of resolved cases, the structure of databases. He is not overly clinical in manner, but when he talks about the destruction of the samples, he borders on the emotional. “They never really thought through how those samples could be used to help, to help families with a missing loved one,” he says. He feels that the samples’ destruction might create a new reality where family members have no way of knowing what has happened to their loved ones.
But when he learns about the plaintiffs’ concerns over informed consent, he pauses and sits up straight. Everything they do in his office revolves around signed consent. The samples they get from family members have the proper signatures on the proper forms. “If those neonatal cards have been used by some other entities for doing something that either the individual, if they are of legal age — or the family, the parent — were not aware of and did not provide consent, I too would have a problem with that,” he says.
The blogosphere and message boards started humming the minute news of the Texas settlement broke. Some sided with Andrea, or thought they did. “Big Brother is in your DNA!” Loving Truth! commented on ScienceMag.org. Cyperstooge blamed “corprofascist military industrial stooges,” adding that “It amazes me that the parents of these kids haven’t gone totally crazy on these people.” But reaction was divided early on: “The destruction of this database is a tremendous loss for science and the citizens of Texas, and a victory for lawyers and the anti-science, pro-stupid lobby,” Consilience wrote on the Statesman’s website. No Worries weighed in, too: “Once again the paranoid few trump the good of science.” Some debated, some all-caps argued, and some tracked Andrea down by Google and barged into her work time with hate e-mails.
Andrea bristles as she describes portrayals of herself and other plaintiffs as anti-screening program, anti-government, anti-science extremists. She is irritated by critics claiming she is against all screening. “Until I had a child, I had no idea that the infant testing program existed. I’m glad that it does,” she says.
When she participated in medical studies to pay for college, however, she remembers signing numerous consent forms and wonders why baby blood collection and — more importantly — storage for future use would not require the same. “To piggyback the warehousing of the genetic information of every person who is born here on something as important as screening is a breach of faith,” she argues.
While admittedly a layperson trying to understand complex scientific issues, Andrea questions the value of the de-identified blood spot, removing valuable information, such as geographic region or gender, which could be of use to researchers. She wonders how much can be gleaned from the DNA itself after stripping away identifying data. On the other hand, Andrea points to a TV segment she saw about an ancient man in Greenland who died 4,000 years ago. By extracting DNA from his hair, scientists could determine eye color, hair thickness and susceptibility to disease. “And you’re telling me you can’t get identifying information out of my kid’s blood spot?” says Andrea.
She has concerns with the new Texas law, too. She would prefer that parents could opt-in, rather than opt-out. She wasn’t surprised when a list of studies, published on the health department website in January, revealed that 800 of the spots were used for forensics. Mixed in with studies to help understand deafness, cleft palate and childhood cancer were two projects by the Armed Forces to enhance “the size, sampling, and quality of forensic mtDNA databases.” The Armed Forces DNA Identification Laboratory (AFDIL) has been using this mitochondrial DNA, or mtDNA, to help identify the remains of military personnel for some time — a fact widely known in forensic circles.
To Andrea, the complexities surrounding this issue can obscure the point. “It’s not about politics, it’s not about science, it’s about consent and it’s about parents’ responsibility to make decisions for their kids,” she says. Ironically, she would have willingly consented if they had asked her permission. Now, however, she distrusts the government. “Once you have a state agency that will bold-faced lie to you once,” she says, “you don’t know what else they might be lying about.”
If Andrea has another baby, she says, “There is no way I would consent to having my kid’s DNA be part of the sample because I just don’t trust ’em.”
Investigative reporter Emily Ramshaw had been on the baby DNA story since she got a tip in late 2009 about the Armed Forces connection to the infant blood spots. While writing for The Dallas Morning News, she had reported on the sexual abuse scandal at the Texas Youth Commission and broke the story of state employees forcing mentally disabled residents into a late night “fight club.” Last year, after joining the new online Texas Tribune, she burrowed into the baby DNA story.
Before Andrea’s settlement last December, Emily filed an open records request, seeking nine years of records on the infant blood spot program. Months later and after a few legal and logistical hurdles, she was sifting through boxes of records in a small room in the health department building in Austin for several hours. “Literally on the second to last piece of paper,” she says she found one e-mail about the Armed Forces database project. Almost everything she had inspected that day had a corresponding folder; this e-mail was loose. So she pushed for answers. The state claimed it was an oversight and quickly produced material on the program. “I’m not a conspiracy theorist, but my hunt for information started to feel like something out of a movie,” says Emily.
In her Tribune article “DNA Deception,” Emily described “the transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA registry.” Her story alleged, based on information in the documents, that the federal government was building “a vast DNA database — a forensics tool designed to identify missing persons and crack cold cases.”
She also found candid e-mail exchanges among Texas officials discussing the controversial blood spot program. Some e-mails showed the health department’s resistance to revealing the program to the public when the state and Texas A&M Health Science Center inked a deal on the storage of samples. In one thread, a state official also revealed an interest in sidestepping parental consent altogether when they started to release blood spots for outside research. As Emily reported: “... the director of birth defects monitoring wrote that he’d ‘prefer to not have to go through’ the process of getting consent.”
When she thought of the destruction of the samples, Emily says she initially felt guilty, concerned that her coverage of the Armed Forces database might have influenced the outcome. She admits to relief after finding out that the state planned to destroy them all along, that her coverage didn’t propel seven years’ worth of research potential into the trash. “I don’t really fear Big Brother. I’m not one of those people,” she says. She understands the point of having an mtDNA research database. “I don’t see a whole heck of a lot of problem.”
She did, however, see a problem with the lack of consent. “What I tried to be careful about with this story but what got lost in the blogosphere was ... I did not believe that these blood spots were being used for nefarious purposes like a lot of my readers did.” She did feel the state and federal government “were not revealing something that was being done with taxpayer dollars because they feared how people would respond,” she says. “And if you fear how people are going to respond, maybe you shouldn’t be doing something in the first place.”
“A DNA registry? A military lab with civilian DNA? “It’s the kind of story that draws out the black helicopter folks.” - Emily
As more details emerged, the blogosphere came unhinged. “DNA Deception” became the third most read story since the Texas Tribune’s launch. Emily, now an assistant managing editor, often didn’t recognize her story as it was covered by and re-posted on all sorts of fringe sites. One she hadn’t yet seen might be the most fringe-y: “Blood of the Innocents Sent to Military Labs,” said a NewswithViews.com article. It started with this sentence: “US government on a quest to find the end times seed.”
An Armed Forces lab stocking up on civilian DNA? An international DNA registry for law enforcement? “It’s the kind of story that draws out the black helicopter folks,” says Emily.
While he still sees the settlement as a victory, Jim Harrington feels the state was dishonest throughout the process. “I was telling Andrea, it’s funny, I’ve been doing this for 37 years now and you’d think I would be skeptical enough about the government not to trust anybody — that that’s my job as a lawyer — and I trusted them for some reason. More than I should have. I didn’t trust them totally. But my skepticism wasn’t profound enough actually.”
The day Emily’s article ran, laying out the use of the blood samples for law enforcement, he accused the health department of “bad faith.” He claims the state repeatedly denied such use during the litigation. Afterwards, he wrote Governor Rick Perry and the state Attorney General Greg Abbott, demanding the samples sent to the federal government be destroyed. The state fired back a response, something about Jim being influenced by media coverage and trying to rack up his legal fees, which ran to $26,000. “It’s sort of chicken shit,” he says of the Attorney General’s office’s response. “These are two guys that run around the state talking about encroaching federal power. And if there isn’t a more stark example of encroaching federal power than building that DNA database, then I don’t know what is,” he says.
On an otherwise nondescript wall of plaques and certificates in his office is a column of art: a painting of a female patron saint, nestled between a portrait of Abe Lincoln and a superhero illustration of his younger self. Jim bought the painting in a Mexican market and laughs as he translates the inscription: Lawyer for difficult and desperate cases. “I love that one,” he says. “That’s so funny because it categorizes my life.”
When asked about the possibility of the samples helping to find missing children, Jim shakes his head. “See, isn’t that a beautiful way to sell it,” he asks. “If you’re going to sell building the databank, isn’t that the best way to do it? Every parent is paranoid about losing their kids. Trust us ... Nobody will have access to this ... We have a magic code, if your kid disappears, that’s the only thing we use it for. Trust us,” he intones.
Once the government has the information, he wonders what it will do with it. Collect it for missing children, sure, but what other purposes could it eventually be used for? Illegal search and seizure is easier to condemn in the physical world, when police bust down the door and rummage through your belongings without a warrant. “But we have a very hard time understanding that technology does exactly the same thing and maybe even does it in a more sinister way,” he says, “because it creates more personally identifiable information that it can rapidly communicate.”
“Don’t you think That if Orwell was going to write a story about baby blood testing, this would be his scenario?” - Jim
“Don’t you think that if Orwell was going to write a story about baby blood testing, this would be his scenario?”
The Web debate over Dna is enough to give a layman a headache. MtDNA only traces maternal lineage and shouldn’t be admissible in court, but it has been used effectively in forensics for “extreme cases.” MtDNA is unreliable. It’s reliable enough. The blood spot samples are anonymous. They’re not really. Yes, it can. No, it can’t. Some posts resemble an almost grade school taunting with college-level material.
That is until you get to PredictER News, which has provided thorough Web coverage, as well as informed bloggers, such as David H. Kaye, who has been following this case from his Pennsylvania State University office. The author of the forthcoming book, DNA Identification and the Threat to Civil Liberties, David heard about Emily Ramshaw’s article on a listserv. He started out concerned about the state giving away the blood spots to the military for criminal identification purposes, but after closer inspection, he called the lawsuit “dubious” and Emily’s article nothing but a “Texas tall tale.”
Armed with Yale, Harvard and Penn State cred, David writes citation-rich blog posts that, on occasion, venture from the academic to the sarcastic. “Maybe another lawsuit would be a good thing,” he wrote after the samples were incinerated. “With competent lawyering and journalism, the people of Texas finally might realize that none of their children’s DNA has found its way into any DNA database for identifying anyone.”
Surprisingly for all his pointed online criticism, David Kaye is soft-spoken over the phone as he discusses differing interpretations of the Armed Forces DNA Identification Lab (AFDIL) study. “I admit I got a little carried away perhaps in the last one,” he says. He is adamant that Texas children need not worry about being caught up “in criminal or terrorist investigations because AFDIL sequenced their anonymous DNA.” He maintains the lawsuit might have been settled before legal merit was determined, that the database is “for statistical purposes.” Paul Stone, the public affairs officer for the Armed Forces Institute of Pathology (AFIP), says he considers David Kaye’s coverage “a good summary of our intent and the work we’re doing.”
In a more recent post, David admits there are minimal privacy risks. “Even anonymized population reference mtDNA databases could lead the police to a family in some situations,” he writes, explaining how a determined police officer could hypothetically, after finding a match in the database, end up going to the health department to potentially find information on the 800 samples provided to the Armed Forces — but only if certain factors were in place. “But it’s a stretch,” he adds. He is not coming down on either side of the consent issue: “This is an issue about which reasonable minds can and do differ.”
Everyone, in the end, seems to get the problems surrounding the lack of consent. Figuring out how the AFDIL project works is harder. The Texas file on the Armed Forces study, obtained by MAYBORN magazine through an open records request, shows efforts by Texas officials to ensure the samples are not linked to individuals. The study, solely funded by the U.S. Department of Justice research wing, is meant to improve the quality of mtDNA databases to assist forensic analysis nationally and globally. AFDIL destroyed its supply of Texas blood spots in March, but we have learned that mitochondrial DNA sequences generated from those spots have been sent to EMPOP (the European DNA Profiling Group mtDNA Population Database) for inclusion in a publicly available international forensic database that launched online in 2006. The Armed Forces wouldn’t comment on the record about the project.
For a nonscientist, the study documents — full of terms like “electropherogram lane files,” “phylogenetic tools” and “bioinformatic manipulation” — can be a confusing read. The AFDIL database could be a database for solving missing persons and cold cases, or it could be used in a more mundane part of the process.
To put it in a TV crime show scenario, the mtDNA database at this point probably couldn’t be used for any final search where detectives point to the DNA profile on-screen and know they have their criminal. After all, samples in this database are de-identified except for ethnicity. It might instead show up in the first half hour, the less-sexy narrowing down of ethnic subgroups part done by some minor lab tech character, providing the detective with enough information to blaze back out to interview suspects already in the victim’s life. Either way, it’s a complicated, fast moving story. It might take more than a few journalists and one law blogger to sort through it.
Meanwhile, the courts and the media keep churning out news on blood and tissue rights. In April, the Havasupai tribe in Arizona won a $700,000 settlement with the Arizona Board of Regents over their DNA. They believed samples were taken to research high rates of diabetes, but researchers actually studied schizophrenia, inbreeding and Indian migration.
In May, yet another bombshell in Texas, unearthed by KXAN in Austin: State health officials at some point started using the baby DNA spots “to barter with for-profit corporations for lab supplies, test kits and maintenance contracts.” Then in October 2008 — right before little Joaquin was born — the state decided to sell the spots at $4 a pop.
The Texas Department of State Health Services says all private company requests for dried blood spots are currently on hold. “Looking back, there are some things that we want to improve. We have learned a lot over the years,” says Carrie Williams, the acting press officer. “And we’re well aware of the evolving science connected to blood spots and the evolving public attitudes toward the uses of those blood spots.” The department is revising its review and approval processes for sending blood spots outside of the agency, with a more rigorous plan likely in place in the summer.
Andrea Beleno doesn’t plan to make this case her life’s work. “I hate to sound really un-activist. But you know, I just wanted people to have the choice to opt-in or opt-out, and for the most part, it’s not a perfect system in my eyes, but they have it now,” she says. She gives interviews to educate parents about their options. “They should look at that form and decide for themselves and their families what is the best choice for them.”
When asked what’s next, she says, “… you know, work, family ... “ Then she laughs and adds, “I’d like to have another baby.”