SAN ANTONIO (CN) – Texas illegally “sold, trade, bartered and distributed” babies’ blood to private companies and the Pentagon without asking or telling their parents, after taking the blood as part of Texas’ “mandatory newborn screening program,” parents claim in a federal class action.
Blood from 8,800 babies was sold or traded for lab equipment from private companies and from the Armed Forces Institute of Pathology – and Texas “knowingly and deceptively withheld this information during settlement negotiations” of a previous lawsuit, the parents say.
Named plaintiffs Jeffrey Higgins and Andromida McCall sued the Texas Department of State Health Services and its Commissioner David Lakey, M.D.
“Plaintiffs complain that Defendants deceptively and unlawfully sold, traded, bartered, and distributed blood samples collected from their children at time of birth under the mandatory newborn screening program for fees, various lab equipment, and various other purposes. The blood samples were made available to private companies for undisclosed purposes and to the Armed Forces Institute of Pathology, without Plaintiffs’ knowledge or consent,” the 10-page complaint begins.
It adds: “The purposes for which the private companies and government agencies used the samples are undisclosed and unrelated to the purposes for which the infants’ blood was originally drawn. Defendants have distributed, sold, bartered, and traded at least 8,800 blood samples. … There is no compelling state justification for such secretive, deceptive, and non-consensual activity.
“Defendants knowingly and deceptively withheld this information during settlement negotiations in Beleno v. Texas Department of State Health Services in this Court (No. SA-09-CA-0188-FB (U.S. Dist. Ct, West Dist. Tex., San Antonio Div.)), a lawsuit seeking to end the unlawful storage of newborn blood samples for an indefinite amount of time. Defendants were repeatedly asked during the negotiations process whether they ever distributed or sold blood samples containing deeply private medical and genetic information to other state or federal agencies or private companies. Defendants consistently denied they had ever engaged in such a practice and attributed such concerns to paranoia on the part of the parents involved in that case. They also made similar false representations to the Texas Legislature, which were videotaped.
“Defendants, without any authority and in violation of plaintiffs’ rights, have taken the liberty to profit from the state’s mandatory newborn screening program in which hospitals, birthing centers, and midwives draw blood from a baby’s heel so the state can test for a variety of birth defects. Babies who show detectable disorders can be treated early to prevent disabling disorders from developing.
“Plaintiffs do not object to the state’s mandated newborn screening program so long as safeguards are in place to prevent the unlawful distribution of blood samples. They object to defendants’ expropriating an infant’s blood sample and any data obtained from it through research or other means, without their knowledge or consent, effectively making it defendants’ property for undisclosed non-consensual purposes, unrelated to the purposes for which the infants’ blood was originally drawn, and deriving profit therefrom.
“Given the sensitive and highly personal information contained in the blood samples, such as DNA, and the fact that such data has been indiscriminately disclosed to private companies and federal agencies, Plaintiffs are deeply and rightfully concerned about the potential misuse of that information. Plaintiffs fear the possibility of discrimination against their children and perhaps even relatives through the use of such blood samples and research activity thereon. The secretive and undisclosed nature of Defendants’ activities and their distribution of such personal information in exchange for monetary or other rewards validates plaintiffs’ concerns and directly illustrates the potential misuse to which such information is subject.”
The samples “consist of five blood spots on a card,” according to the complaint. The parents say they are worried private companies and federal agencies will misuse the information for “medical research, lab equipment calibration, production of for-profit pharmaceuticals, and other undisclosed matters indefinitely.”
The state practice also violates the U.S. Department of Health and Human Services’ standards for studies involving children, which require a description of the research, disclosure of privacy implications, parental consent, a listing of whom to call if questions arise about the research, and a “statement of no reprisals” for people who decide not to participate in the research, the class claims.
“At the time when plaintiffs’ children’s blood samples were taken, defendants observed no accepted professional protocols whatsoever in this regard,” the class claims.
The parents say the agency is “aware of the legal ramifications of their actions,” as it already settled the similar, aforementioned suit. “Nevertheless, defendants have not as of yet accounted for and destroyed all the outstanding blood samples that they unlawfully distributed, sold or traded.”
The McCalls seek class damages for violations of their children’s 14th Amendment rights to privacy and liberty, and freedom from unlawful search and seizure. They also seek injunctive relief ordering the state to halt these practices and “destroy all remaining bloodspots not in their possession and any and all information and data obtained from such bloodspots by private companies and government agencies.”
The class is represented by James Harrison with the Texas Civil Rights Project in Austin.