Baby DNA in Government Database?

4 February 2010- United States- When Annie Brown’s daughter Isabel was just a month old, their pediatrician told them to sit down in his clinic as he had some rather disconcerting news to give them. Isabel had a gene responsible for cystic fibrosis. They did some further tests on the baby DNA to check whether Isabel’s DNA really did have this gene and would thus, stand a chance of developing this illness. The tests proved Isabel did not have the gene.

Annie Brown and her husband questioned how the doctor had this information in the first place despite the relief that their baby’s DNA was free of the cystic fibrosis gene. Cystic fibrosis is a hereditary disease and some people are just carriers. If someone is affected by cystic fibrosis their entire body is affected including liver, pancreas, intestines and sex organs. The condition can be serious and may lead to death.

They questioned their pediatrician regarding the access he had to their child’s genetic information. He told them that it was normal for baby DNA samples to be taken from new borns and tested to see whether the child was genetically healthy or not and to know whether there were any genetic predispositions. Moreover, the couple was shocked to find out, these tests are obligatory and are not necessarily carried out with the parent’s consent. In Florida baby DNA is stored in genetic archives for an indefinite period and other states also do this.

Parents who have discovered their child’s DNA was taken without their consent have opened court cases. The debate is rife and ongoing; why should the government hold DNA profiles in the first place? The claim is that these DNA profiles can prove useful for future tests or may be pre-emptive measure to protect the child in cases of future abduction, kidnapping and crime. It is normal for the government to take DNA samples without parental consent says Brad Therrell, director of National Newborn Screening & Genetics Resource Center.

Baby DNA Testing history

Baby DNA testing goes far back to the 1960s when genetic material from infants was taken to test for genetic conditions that may cause the death of the child or complications later in life which may results in outcomes such as mental retardation. Prenatal DNA testing is still an important aspect of prenatal care and the fetal DNA sampling methods used for prenatal care (to check that the baby is developing healthily) are also used for paternity testing. Go here for more information and details.

Since the 60s, genetic testing has saved countless children. However, the issue of privacy and data protection is very much a concern of today’s society and people are expressing anxiety and paranoia at anyone have access to their DNA profile without their explicit consent. In the UK, the Human Tissue Act protects individual’s rights over their own tissue samples (which of course, includes DNA).

Baby DNA sample Often Donated for Research

Baby DNA does not necessarily remain tucked away in government genetic archives; it is sometimes given to research companies along with the name of the child from which the DNA came; parents are naturally appalled by this. However, from a scientific perspective, it is for a cause. Hundreds of studies have been realized thanks to the samples taken from infant DNA and this means that genetic research is able to overcome boundaries perhaps finding new cures and treatments.

Annie Brown has expressed valid concerns over the baby DNA database; might it affect her chances of getting a job later in life? What about insurance companies? Will she be denied health insurance if companies gain access to this information?