PKU Infant Heel Prick. DNA Database By Stealth?
I believe this test is standard ALL over the Western world. My home state of West Oz has alledgedly destroyed it's entire database after police used it without consent. I'm going to follow it up
You can see the ramifacations of this test. Knowing what we know and what I know personally of scientists there is NO WAY they hav'nt already transfered this database elsewhere.
NEVER trust the scientific community as a whole. They cant help themselves.
Narration: If it was decreed… at birth, every Australian should have their fingerprints put on record there’d be an outrage. Yet in hospitals around Australia something more personal than a fingerprint is stored from birth, in these boxes of cards.
If you were born in Victoria after about 1975 then a sample of your blood will be stored on these cards. And that’s more personal than a fingerprint, because that spot of blood also contains a sample of your DNA.
This DNA database on everyone under the age of 30 has come about accidentally…from the heal prick every baby is given after birth. There’s no doubt this Guthrie test is vital, because it allows doctors to pick up diseases like cystic fibrosis very early on, unlike in the past.
Professor Bob Williamson: I worked for many years on cystic fibrosis and I saw hundreds of families with young people like Madelaine here with CF who were so angry because they didn’t know their child had cystic fibrosis until they were two or three.
Narration: But the controversial part of the Guthrie test comes afterwards. The card is just popped into a box and stored…indefinitely, creating that DNA database. Unlike a fingerprint, your DNA holds clues to all sorts of family secrets. The diseases you’re prone to, your chances of getting cancer, and whether dad’s really the dad of the children. Information you may not want employers, insurance companies or the police to know. Yet there are no laws saying who can have access to the Guthrie cards.
And in Western Australia the police have accessed them, without the consent of the parents. It was for a case in Bunbury, two hours south of Perth - back in 1997 police were trying to convict a man of incest.
Detective Sergent Gary Fraser: This case is the worst case that I have been involved in – involving incestuous behaviour – very extremely tragic where the father targeted his biological daughters and there’s actually been children fathered by the biological father.
Narration: Detective Gary Fraser wanted a DNA sample to prove the man was the father of his grandchildren. But in those days he needed consent and no one in the family would give it.
Detective Sergent Gary Fraser: This particular perpetrator had a hold over his family – especially the daughters where they were in fear of him. They just succumbed to his wishes.
Narration: So Gary got a search warrant and went to the Perth hospital where the Guthrie cards were stored. He got his DNA samples from the blood spots on the cards…and successfully convicted his man.
But then the Perth hospital made a controversial decision…they destroyed their Guthrie card database. The police wouldn’t be able to do this again.
Dr Barry Lewis: Well certainly that’s a concern to any program where the cards are being used for purposes that the parents didn’t consent to.
Narration: Barry Lewis is in charge of Western Australia’s Guthrie cards and he doesn’t believe the cards should be kept if there are no guarantees about who has access to them. He’s concerned some people might stop having their babies screened for disease because they’re worried about the blood spots being held. So they have a new two-year-only storage policy.
Dr Barry Lewis: We think it’s an important issue and that’s why we’ve made it quite clear that we only store the cards for two years - that we use them for the purposes of newborn screening and that we’re not in the business of storing them for any other potential good or any potential harm in the future as well.
Narration: Gary still believes he did the right thing, because he saved a family.
Detective Sergent Gary Fraser: I certainly feel that was justified because I just at that particular time had a little bit to do with the family and do know that this vicious cycle of incest has been broken.
Narration: The question all the other states are now facing is, should they get rid of their Guthrie cards too? Critics say by destroying the cards Western Australia has also destroyed vital health information. To see why it’s worth keeping the Guthrie cards, consider this Sydney man’s situation. His brother had the genetic disorder cystic fibrosis.
Michael Easton: The most distinctive thing for someone who would meet him was his cough. It’s like you’d always know where he was.
Narration: Now Michael is concerned he could be a carrier too…and pass it onto his kids. That became an issue when Michael and Sally decided to have children.
Sally McCausland: Well, I guess after seeing Tom suffering. (When I got to know him he was in the last stages of the disease and I saw how frail he was and all that sort of thing.) I guess the idea of having a child with that would be pretty daunting.
Narration: To test if Michael had the genetic mutation, his doctors needed a sample of his brother Tom’s DNA to find out just which of the many cystic fibrosis mutations he had. However Tom had died. But they got his DNA from his Guthrie card.
Michael Easton: The fact that they were able to access Tom’s genetic material and find out what version he had they were able to find out exactly what they were looking for.
Sally McCausland: Once we did the test, and found out that he wasn’t carrying it then it was such a huge relief. It was something we didn’t have to think about any more. Because there are so many other things you have to think about as well.
Narration: If Michael had lived in Western Australia there would have been no Guthrie card to test. But Barry says that not a problem.
Dr Barry Lewis: That’s correct. But usually in these situations there are the family members, mothers father, brothers and sisters where their DNA is potentially available to confirm what genes maybe being carried within that family.
Narration: Agnes Bankier is in charge of new born screening at Melbourne’s Children’s Hospital and she disagrees with Barry. Other family members’ DNA can only be checked for the most common form of CF not the rarer ones.
Associate Professor Agnes Bankier: So if we were just to look at a blood sample from another family member, we would only be checking for the most common mutation and we might come to the conclusion that they haven’t inherited the gene whereas in fact they may have and we simply haven’t tested for the particular gene change.
Narration: Agnes Bankier thinks it’s vital the Guthrie cards be kept indefinitely. As she sees it, a DNA sample is not that special – we leave them all over the place anyway. But there is a sample of your DNA there!
Associate Professor Agnes Bankier: There’s a sample of your DNA when you go to the hairdresser and have a hair cut – you leave a sample of you DNA on the floor. So the concern is not that it’s there but how it might be used. But the fact is that it is used in a tightly regulated way.
Narration: The Melbourne Children’s hospital does have an agreement with their local police. While the debate goes on one thing everyone agrees on is it would be a disaster for people to stop having their children screened at birth for fears over the cards. Do we need new laws to regulate and protect the Guthrie cards?
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