Texas officials agree to destroy babies’ blood samples after settling lawsuit
Jay Root, The Associated Press
AUSTIN — Texas health authorities will destroy more than 5 million blood samples taken from babies without parental consent and stored indefinitely for scientific research.
The Texas Department of State Health Services announced Tuesday it would destroy the samples after settling a federal lawsuit filed by the Texas Civil Rights Project. The project, acting on behalf of five plaintiffs, had sued the Texas Department of State Health Services and the Texas A&M University System.
The lawsuit alleged that the state’s failure to ask parents for permission to store and possibly use the blood — originally collected to screen for birth defects — violated constitutional protections against unlawful search and seizure. The plaintiffs cited fears their children’s private health data could be misused.
Under the settlement overseen by a San Antonio federal court, the blood samples collected without parental consent must be destroyed by early next year. It also requires the department to publish a list of all research projects that used the blood specimens.
State health services spokeswoman Allison Lowery said an estimated 5.3 million samples would be destroyed. About 4 million to 4.5 million are stored at the Texas A&M School of Rural Public Health, she said.
Andrea Beleno, 33, was one of the parents who sued the state. She said she was stunned to learn that blood samples taken from her son, born in Austin in November 2008, were being stored indefinitely for unspecified research projects.
“You have to give permission for them to give your kid formula in the hospital,” Beleno said. “I don’t understand why you don’t have to give permission for the state to keep your kid’s DNA.”
Texas has been collecting blood samples for decades to screen for at least 27 different birth defects and other disorders. By law the blood could be taken without consent by hospitals, birthing centers and midwives.
The Department of State Health Services established a policy in 2002 in which it began setting aside the blood “spots” after the screenings are done and allowing some of it to be used for research. Before that, the blood was discarded after a certain interval.
This year the Texas Legislature tightened up the procedures, providing opt-out policies for parents, extending privacy guarantees and implementing controls over any scientific research that uses the samples. At issue in the lawsuit settlement are the millions of samples collected and stored before the law took effect in May.
“As a result of this settlement, DSHS will destroy all bloodspot cards received by the department before May 27, 2009,” the health services agency said in a written statement. “We will continue to be very sensitive to the privacy concerns of parents and the confidentiality of all medical information.”
Under current law, the department can still use the blood samples for quality control and disease research as long as parents don’t object. The department screens about 800,000 newborn blood specimens each year.
State agrees to destroy more than 5 million stored blood samples from newborns
By Mary Ann Roser, AMERICAN-STATESMAN STAFF
To settle a lawsuit, the state has agreed to destroy more than 5 million blood samples from newborns that it had stored indefinitely for possible research without parents’ consent, the two sides said Tuesday.
The Texas Civil Rights Project filed the lawsuit in U.S. District Court in San Antonio in March on behalf of four parents and a pregnant woman who dropped out later. It claimed that the state’s collection and storage of the samples amounted to “an unlawful search and seizure” and violated the privacy rights of the parents and their children. Under the settlement, the state will destroy 5.3 million samples it has collected between 2002, when the Department of State Health Services began storing the blood, and May 27, when a new state law restricting the practice was signed.
Federal Judge Fred Biery approved the settlement agreement Dec. 14 and gave the state 120 days — until April 13 — to finish destroying the samples, which are stored at Texas A&M University’s School of Rural Public Health.
This year, when stories in the American-Statesman brought the practice to light, the state health department and some medical researchers defended it, saying that collecting the blood spots on paper — done when newborns are screened for various health disorders — might one day provide valuable clues about childhood cancer and other diseases. They said that because the samples were coded and did not identify the babies by name, privacy rights were protected.
But the Texas Legislature approved a law in May requiring medical professionals to inform parents or guardians that the blood spots would be collected and stored indefinitely and could be used for research. Parents who objected could send a statement to the state health department, and their child’s samples would have to be destroyed within 60 days. If the parents didn’t do that, the child could upon reaching adulthood.
Between the time the law passed and Nov. 2, about 6,900 Texans have signed forms asking that the state destroy their child’s samples, out of 240,000 children born in that period, department spokeswoman Allison Lowery said. The department is getting 500 to 600 requests a week to destroy samples, she said.
A statement from the state health department said it “believes settling this lawsuit is in the best interest of this program’s core mission to screen all newborn babies in Texas for life-threatening disorders. Newborn screening saves children’s lives, and settling this lawsuit allows us to continue operating this critical program.”
Jim Harrington , director of the nonprofit civil rights group in Austin, said his organization was “very pleased with the way it worked out.”
Harrington said there were only two options to end the lawsuit: destroy the samples or try and go back to 2002 and get consent from all parents. About 400,000 babies a year are born in Texas.
Among the parents who sued was Austin lawyer Andrea Beleno, Harrington’s daughter-in-law. Her son Joaquin Harrington was born in November 2008, and Beleno said she had no idea “in the haze after giving birth” that any blood had been drawn and stored.
“To me, this whole thing was about consent,” she said. “If they had asked me … I probably would have consented. The fact that it was a secret program really made me so suspicious of the true motives, there’s no way I would consent now.”
Harrington said he will work with a legislative committee before the next regular session in 2011 to refine the new law.
He wants the state to divulge what research it is using the samples for and whether anyone is making money from it. He also wants to see how well the “opt out” provision is working.
Many other states do what Texas had been doing, and a consumer group in Minnesota has been fighting the practice there for several years.
“The State of Texas has taken first steps to restoring the genetic privacy rights of Texas children. This is a wonderful Christmas present for Texas citizens,” Twila Brase, president of the Citizens’ Council on Health Care in St. Paul/Minneapolis, said in a statement.
State to destroy 4 million newborn blood samples
By PEGGY FIKAC, Austin Bureau
AUSTIN — The state will destroy an estimated 5.3 million blood samples legally collected from newborns but kept without parental consent under a federal lawsuit settlement announced Tuesday.
The number of newborns involved is unclear because multiple samples are received from each by the Texas Department of State Health Services, department spokeswoman Allison Lowery said.
Typically, two samples are taken from each child, but there could be more, she said. The disputed samples cover a period of about seven years starting in 2002. The state conducts newborn screening to detect disorders or illnesses.
“This is about consent,” said lawyer Jim Harrington of the Texas Civil Rights Project. The group, after discovering the agency had been keeping the samples without permission, sued on behalf of parents in federal district court in San Antonio.
The Health Department said in a statement it would destroy the samples — retained as blood spot cards — that it received and stored before legislation took effect last May allowing their retention. The legislation allows parents, guardians or managing conservators to opt out of having the blood retained.
Lowery said the agency is seeking permission from fewer than 400 parents to preserve their babies’ samples because the children tested positive for rare disorders.
Collected before lawsuit
She said samples have been securely stored at the Texas A&M Health Science Center School of Rural Public Health.
That institution said in a statement that all the blood spots at the center were collected before the lawsuit and are subject to a joint resolution between the center and the agency to destroy them.
Andrea Beleno, an Austin mother who was one of the plaintiffs in the lawsuit, said she was pleased with the settlement.
“There’s no financial gain for any of the plaintiffs,” Beleno said. “Basically, what we wanted to do was to make sure that our children’s privacy was being protected and that the state is respecting our rights, because if we don’t stand up and make the government do that, nobody’s going to do it for us.”
Parents from San Antonio and Houston also were part of the lawsuit, which was filed against Commissioner David Lakey of the Department of State Health Services and Dr. Nancy Dickey, president of the Texas A&M Health Science Center and vice chancellor for health affairs of the Texas A&M System.
“The Texas A&M Health Science Center is glad that we have reached agreement in order to settle the lawsuit,” Dickey’s office said in a statement. “We are saddened, however, that a superb database has been lost. This database could have continued to shed light on causes of congenital birth defects and potentially led to preventive measures saving thousands of infants and their families the distress these defects cause.”
The parents’ lawsuit said there was no legal authority to keep the blood indefinitely without consent.
Harrington said his group became aware the blood samples were being stored after being called by a reporter from the Austin American-Statesman. Beleno said she first read about it in the newspaper.
Detailed conditions
Under the settlement, Harrington said, all blood specimens must be destroyed unless the state gets written permission to retain and use them. The destruction must occur within 120 days of the lawsuit being dismissed with the settlement, which occurred Dec. 14.
The agency also must post information on its newborn screening Web site, including a list of all research projects for which it has provided newborn-screening blood specimens.
In addition, the agency must inform the parents who sued how their children’s blood was used and any financial transactions involving the specimens, Harrington said.
Pledges compliance
The Texas Department of Health said in its statement that it is complying with the new law and “will continue to be very sensitive to the privacy concerns of parents and the confidentiality of all medical information.”
“If parents don’t object, the department saves the samples for uses allowed under the new legislation — primarily quality assurance and control purposes to ensure accuracy in lab testing and because the samples could provide an invaluable resource in researching new or more effective ways to prevent, diagnose and treat serious medical conditions that affect Texas children, including leukemia and birth defects,” the agency said in its statement.
Spreading the gospel of the 2010 census
By: Karina Kling
Stand up and be counted — right along with Mary and Joseph.
There’s a push to promote participation in the 2010 census using the gospel, and it’s causing some controversy among religious organizations.
But some say the message could make all the difference in future representation.
As Christians across the country gather for Christmas Eve services next week, many will hear the story about the birth of Jesus.
They might also find part of that message on a poster, with baby Jesus as the poster child.
It was created by the National Association of Latino Elected Officials, not the Census Bureau.
The group is sending out more than 7,000 posters to churches to inform Hispanics about the census and encourage them to participate regardless of their status.
“It can have an effect to say, ‘Well the holy family participated in a census,’ much like the holy family, other families, your family should participate in this. Stand up and be counted like they did,” Christian Gonzalez with the Diocese of Austin said.
Gonzalez said they haven’t received any of the posters yet and would allow individual pastors to decide to distribute them, but he doesn’t see a problem with its message.
“Church is a safe place for everyone to come, and since it is a safe environment, we want people to know we’re giving them something safe to do and that is participating in the census,” he said.
“Hopefully it goes a long ways toward minimizing that fear that’s always stirred up by people that are unhappy with the Hispanic community being as large as it is in Texas and the U.S.,” Jim Harrington, Director of the Texas Civil Rights Project, said.
Harrington said if this helps lessen the fear for people to participate, that’s a good promotion.
The Census is used to help allocate more than $400 billion a year in federal dollars, redraw state and local political districts and determine the number of seats each state gets in Congress.
“It’s in the interest of the Hispanic community to be counted because it means they’ll have more direct representation in Congress,” Harrington said.
But one Latino evangelical group calls the campaign anti-Christian and is calling Latinos to boycott the census.
National Coalition of Latino Clergy and Christian Leaders Chairman Reverend Miguel Rivera said, “It’s blasphemous because it uses the name of Jesus for the purpose of the census and not worship. We can guarantee more than three million members won’t participate in the census in order to put fear into Congress of losing millions of voters if immigration reform doesn’t happen.”
So an attempt to spread the gospel about the 2010 census could instead push plenty of people away.
Faith leaders and community organizations are holding a day of action on December 22nd to raise awareness about the importance of participation.
Census forms will start being mailed out in March.
Self Help Resources
Filing a Grievance in a Texas Prison or Jail
How to Request Medical Care in TDCJ
Filing a Grievance in a Texas Prison or Jail
By Scott Medlock
Director
Prisoners’ Rights Program
Texas Civil Rights Project
In most cases, prisoners must file a grievance about a problem in prison before they can file a lawsuit. The Prison Litigation Reform Act (PLRA) requires prisoners to “exhaust administrative remedies” before they can take a problem to federal court. Though grievances may not work, an inmate must at least try to fix a problem through the grievance process.
In most prisons and jails, “exhausting administrative remedies” requires filing a grievance and an appeal. If an appeal is not also filed, a prisoner has not “exhausted” their remedies and cannot go to federal court.
Texas Department of Criminal Justice
For inmates in the Texas Department of Criminal Justice, complete a Step 1 and Step 2 grievance. Be careful to follow TDCJ’s grievance rules.
Before you file:
Talk with prison staff about the problem. This is considered “informal resolution.”
How to file:
1. Get a grievance form from TDCJ. Forms should be available in the law library and your housing unit.
2. Follow these guidelines when you write your grievance:
- Only write about the issue you want help with. Each grievance can only discuss one problem. If you have more than one problem, write a different grievance for each problem. Remember you are limited to writing one grievance per week.
- When you write the grievance, explain who you talked to and what they did (if anything) about your problem in the “informal resolution” part.
- Be sure to file your grievance within 15 days of learning about the problem, or as soon as possible.
- Make sure you include how you would like to have the problem solved. For example, if you are sick and need to see a doctor, write “I want to see a doctor.”
- Do not use indecent, vulgar, or threatening language. TDCJ has the right to refuse to process a grievance with bad language.
3. TDCJ has 40 days to respond to your Step 1 grievance. You can file a Step 2 grievance as soon as you receive a response to your Step 1 grievance. If 40 days have passed and you have still not received a response and you have not been notified that there will be a delay, you can proceed to file the Step 2 grievance.
You must file a Step 2 grievance within 15 days of receiving the response to your Step 1 grievance. TDCJ has 35 more days to process a Step 2 grievance.
4. Always keep copies of your returned grievances. You may need them later on and it can be difficult to obtain copies.
Family of TDCJ inmates can also contact TDCJ’s Ombudsman at www.tdcj.state.tx.us/adminrvw/adminrvw-ombud.htm. Speaking with the Ombudsman does not exhaust administrative remedies under the PLRA. If you wish to take legal action, you must also make sure Step 1 and Step 2 grievances have properly been filed in most cases. Contacting the Ombudsman is a way to solve problems without having to resort to the courts.
County Jails
Policies are different in every county jail. Please check your inmate handbook for information about how to file a grievance. If you were not given an inmate handbook, ask jail staff how to file a grievance.
If jail staff will not explain how to file a grievance to you, you may not be required to file a grievance before taking your case to court. Make notes about who you asked for help filing a grievance and what they told you.
All county jails are inspected every year by the Texas Commission on Jail Standards. To report a problem to the Commission, you can complete an online form here: www.tcjs.state.tx.us/complaint.php. Contacting the Commission does not exhaust administrative remedies under the PLRA. If you wish to take legal action, you must also make sure to follow the jail’s grievance policies in most cases.
Texas Youth Commission
For inmates in the Texas Youth Commission there are several options to file a grievance, which are different for children and parents:
For children in TYC custody, grievance forms are available from the grievance clerk on each dorm. Request a form, complete it, and place it in the drop box on the dorm. TYC has 15 days to respond to the grievance
For parents, guardians and other youth advocates, grievances can be submitted to TYC’s Incident Reporting Center: http://www.tyc.state.tx.us/news/tyc_hotline.html
In an emergency, children, parents and advocates can call 1-866-477-8354, toll-free. Children can make this call from the phones in their dorms for free.
If TYC does not satisfactorily respond to the grievance within 15 business days, you must appeal. Ask the facility who appeals should be given to. Children, parents, and advocates may file appeals in the same way. If the appeal does not resolve the problem within 15 business days, another appeal must be filed with TYC’s executive director at TYC’s central office.
For children on parole, the process is the same. Children on parole can get a grievance form from the district parole office where they report.
For more information about TYC’s grievance process, see TYC’s website: austin.tyc.state.tx.us/Cfinternet/gap/93/gap9331.htm
Children, family and youth advocates can also contact the Office of the Independent Ombudsman: www.tyc.state.tx.us/ombudsman/index.html, an independent watchdog agency supervising TYC. Speaking with the Ombudsman does not exhaust administrative remedies under the PLRA. If you wish to take legal action, you must also make sure to follow the grievance procedures in most cases.
There are also many exceptions to the PLRA. If you qualify for one of these exceptions, you may not need to file grievances before going to court:
- If you file your lawsuit in state court, the PLRA does not apply to TYC and county jail prisoners.
- The PLRA only applies to people in prison, so it may be possible to wait until you are released to file your case. (Remember, though, in most cases you must file within 2 years of when the problem occurred—do not wait to get out if it will take more than 2 years.)
- If you want to file a lawsuit because someone you are related to died in prison, you do not need to file grievances.
If there is any doubt about whether you qualify for an exception, you should file grievances. Try to talk to a lawyer before relying on an exception.
Disclaimer: This information is for general information purposes only, and is not a substitute for the advice of an attorney. It is not legal advice. Legal advice involves the application of legal knowledge and skill by a licensed attorney to your specific circumstances. If at all possible, always talk to a lawyer before filing a lawsuit. To find a lawyer near you, call 1-800-252-9690.
How to Request Medical Care in TDCJ
By Scott Medlock
Director
Prisoners’ Rights Program
Texas Civil Rights Project
1. Place a sick call–complete a sick call form, clearly describing what your medical problem is. You do not need to use legal jargon like “deliberate indifference”–just tell the medical staff what your problem is and why you want to be seen. Sick call forms are available on your housing unit.
TDCJ policy requires all sick calls be answered within 48 hours. If you have not received an answer within 48 hours, proceed to the next step. See Correctional Managed Care Policy 38.1.
2. Make an I-60 request–If you are not seen after placing a sick call, complete an I-60 requesting medical care. An I-60 is a request to prison officials, and the form is available on your housing unit. Clearly describe the problem, and state you have already completed a sick call. Tell the person who will read the I-60 that you want to be seen by medical staff. Again, there is no need to use legal jargon.
3. File Step 1 and Step 2 Grievances–If you are not seen after placing the sick call and making the I-60 request, file a grievance. Make sure to file the rules regarding filing grievances carefully. Consult your Offender Handbook for instructions on filing a grievance. Grievance forms are available on your housing unit and at the law library. Again, there is no need to use legal jargon.
When filing the grievance:
- Only write about the issue you want help with. Each grievance can only address one problem. If you have more than one problem, write a different grievance for each problem. Remember you can only file one grievance per week, so you have to prioritize.
- When you write the grievance, explain who you talked to and what they did (if anything) about your problem. Write that you filled out a sick call request and made an I-60 request.
- Be sure to file your grievance within 15 days of learning about the problem, or as soon as possible.
- Make sure you include how you would like to have the problem solved. For example, if you are sick and need to see a doctor, write “I want to see a doctor.”
- Do not use indecent, vulgar, or threatening language. TDCJ has the right to refuse to process a grievance with bad language.
If your Step 1 grievance is denied, then file a Step 2 grievance. If TDCJ does not respond to your grievance after 40 days without telling you a response is coming, you can file a Step 2. The Step 2 grievance will be reviewed by TDCJ Health Services staff.
You must file a Step 2 grievance within 15 days of receiving the response to your Step 1 grievance. TDCJ has 35 more days to answer a Step 2 grievance.
4. Contact TDCJ Health Services directly–The Health Services Division’s Office of Professional Standards investigates prisoners’ complaints about health care. Their address is:
Texas Department of Criminal Justice
Health Services Division
3009-A HWY 30 West
Huntsville, Texas 77340-0769
If you have a friend or family member in the free world, they can call Health Services directly at (936) 437-4271. Health Services may require you to execute a medical release before they can talk with your friends or family. This is to protect your medical privacy. You can get the release form from the medical department on your unit. (The form needs to be renewed and updated every six months.)
A friend or family member can also contact the TDCJ Ombudsman at (936) 437-6791. The Ombudsman will also likely require your family to have a medical release to protect your privacy.
Make sure to document each of the above steps by saving copies of the forms or writing in a diary when you made the requests.
If you can afford to be seen by a free world doctor, you have a right to have one evaluate you. Correctional Managed Health Care Policy E-44.2. You will have to pay all the costs associated with this visit, however, and will have to find a doctor willing to come to the prison to visit you.
If all else fails, you can try to contact a lawyer for help, or file a lawsuit yourself. It is very difficult for a prisoner to win a lawsuit, even if he or she has a lawyer, so you should always try to find a lawyer before going to court yourself. Lawyers’ addresses can be found in the directories in the law library.
** This information is not a substitute for speaking with a lawyer. Before filing a lawsuit, always consult an attorney. This information is not a substitute for a lawyer’s advice.
