Many countries perform routine newborn screening tests based on blood samples taken from the child shortly after birth. Blood that was not used in the screening has been stored in many places and used for research related to birth defect and related to prenatal causes of adult diseases. Use of these samples has for example shown that schizophrenia may be caused by pre or perinatal infections. Many would agree that these samples provide an extremely valuable research resource that often has been paid for by public funds.
A Texan lawsuit recently ordered destruction of 5.3 million such blood samples, stored without the parents’ consent (1). Many fear that a similar practice could spread to other similar biobanks. The case was brought by a not for profit civil rights organization on behalf of five parents who claimed that their infants’ blood had been stored and used in research without their informed consent.
All would agree that samples should not any longer be stored without consent. There would be disagreement about how active this consent has to be but parents or the children should have the opportunity to have their blood samples taken out from the biobank if they want that.
Biological samples are in most parts of the world no longer stored if the persons involved do not accept storage and all can have their samples removed at any point in time if they withdraw their consent. But what should we do with samples that were stored at a time when consent was not obtained or requested? The court in Texas said these samples should be destroyed.This would be an unfortunate precedent and, fortunately, a judge in another US state has thrown out a similar case.
Destroying the samples take away options for doing research that could be beneficial for many people; research that would cause no harm, where even the risk for disclosure of personal information easily could be eliminated. The risk is related to the existence of the data source, not its use for research. Would it not be more reasonable to set up guidelines for its use that would eliminate the risk for any individual to be harmed by the biological information from insurance companies, employers or the police?
It may be acceptable that we can not use research results collected under unethical conditions such as the studies conducted in the KZ camps during World War II. But storing blood samples obtained from routine health service encounters is not of that caliber and ethical standards change over time. We should make the best possible use of these samples for the public good and we should, of course, respect peoples’ right to have their data removed from such databases. We need no legal court to make that decision for them.
Jorn Olsen, Neil Pearce, Shah Ebrahim, Cesar Victora
- M May. Destroying newborn blood samples threatens birth defect research. Nature Medicine 2010; 16: 140.