Heel Pricks Newborn Babies and Genetic Privacy violated In SA
DNA screening is illegal when you are an adult but can be done when you are a newborn infant, genetic experimentation and researches that boost State Health Government or contractor involvement.
This has been implemented as a law in other countries,
Screening is new born genetic testing and profiling the individual, the DNA is being used but for the first 6 months the blood is no more useful except for the value of the DNA, sequencing of the entire genetic blueprint of the child
" In addition, the PLIEM laboratory may facilitate in prenatal testing and testing of siblings of the index patient. The economic implication of prenatal and sibling testing depends on the family structure and financial abilities of the parents. Each case is unique and limited costs will be applied to ultimately support families in uncertain times. PLIEM also collaborates with various metabolic and genetic laboratories in Europe and America to provide additional specialised diagnostic tests at no or minimal costs (depending on the selection of tests for a specific
disorder). While providing a vital, one-of-a-kind testing service in South Africa, the laboratory also – with the informed consent of parents – uses residual blood samples for further research on inherited metabolic disorders. The greater the knowledge base about these disorders in South Africa, the greater the prospect of assisting generations not yet born
PLIEM -We are offering this test as of 1 Augustus 2014. At the moment samples are sent to a laboratory in the USA, and from July 2015 this test will be conducted in our own laboratory.
Baby DNA considered National Treasure
"This nationwide collection of newborn DNA has been called a "national treasure" by Sharon Terry of the Genetic Alliance and referred to at the December 2009 forum as a "scientific goldmine" by Amy Gaviglio, a genetic counselor at the Minnesota Department of Health.
Increasingly, state health departments have begun to store newborn blood spots (Baby DNA) and newborn genetic test results and claim them as state government property. The test results are placed in a state laboratory database (genetic registry) and the blood spots are warehoused in the state health department or elsewhere by contract. For instance, the 4.2 million blood spots of Texas newborns were being stored at Texas A&M.
In Minnesota, there are more than 1.5 million children listed with their genetic test results in the state's database. There are over 900,000 Minnesota children whose DNA is warehoused by the State with at least 70,000 children added per year.
The primary purpose for long-term storage of baby DNA and newborn genetic test results is research.
Newborn Genetic Screening Mandate
Parents are not asked before the newborn genetic testing is done. Most states mandate the testing. No consent is required. Some states allow parents to opt out of testing, particularly for religious reasons. However, parents are not usually informed that opting out is possible. In fact, most parents have no idea that the testing is even being done.
However, if they were given a choice, most parents would likely choose to have their child tested to speed up the diagnosis and treatment of these relatively rare newborn disorders.
This affirmation of newborn screening may change in the future as newborn screening advocates contemplate testing the baby's genome for childhood- or adult-onset diseases. One of the future concerns with newborn screening, as noted in 2008 by the President's Council on Bioethics (The Changing Moral Focus of Newborn Screening) and by Citizens' Council on Health Care, is the potential slide to eugenics.
If parents feel concerns about how their child's genetic test results may impact their children, their own choices, or their children's options in employment, insurance, or procreation, parents may begin to avoid testing or try to limit the number of conditions for which their child is tested. Already, some States mandate newborn genetic testing for a shorter list of conditions and allow parents to opt-out of testing for a secondary more controversial list of genetic conditions.
The screening of the baby provides insight into the genetic traits of the mother of the child, as described by Dr. Piero Rinaldo, M.D., director of the Mayo laboratory, at a forum on the use of residual (left-over) newborn dried blood spots ("Bloodspots, Genetic Research and Privacy" September 23, 2009 forum):
There’s actually an interesting collateral effect of newborn screening. More and more of the conditions that we screen for, now we’ve found that abnormal results in a baby is actually because the mother is affected....I think this could become an angle where we can actually bring to the attention of obstetricians that [it] is also their problem because sometimes newborn screening diagnoses not an affected child, but an affected mother. And it’s the mother who does have a condition that may or may not be symptomatic.Dr. Alan Fleischman, MD, Medical Director of the March of Dimes, stated at the September 2009 forum the following basis for the state's authority to mandate the genetic testing of children:
You have the right to take back the blood sample
you al;so have the right to do this in private
The Government has no right to store your DNA in a BIO Bank for Further Research without your consent
Stay Vigilant !