I just read this from the medical journal of Australia:
For better coverage, perhaps screening should become mandatory in Australia, as it largely is in the United States. In Australia, we have felt that parents have a right to refuse neonatal screening on behalf of their baby. But should parents be able to refuse a procedure that carries such a tiny risk and has an obvious potential benefit, and would this not infringe on the baby’s right to have what ethicists call an “open future”? This is a difficult question, but one that is growing in importance as the potential for well targeted newborn screening increases. At present, in our experience, only a very small number of parents refuse newborn screening, for a variety of reasons. If we feel that newborn screening tests are valuable, then we need to ensure that every baby has a chance to benefit. Few preventive medicine programs are so effective.
I can’t believe that governments actually think that these things should be mandatory. What a crock. Over the past year new born screening have tried to make me hand in a blank form for the clients who refuse the test. Well it’s none of their business and I’m under no obligations so I don’t do it. What about confidentiality?
I started looking into the exact figures over this as I keep being told that clients HAVE to do it. A client of mine was recently told and every baby in Australia has it. Well about 50% of women who birth with me don’t want it so don’t have it.
Thus, there are many areas for improvement of the screening service. With around 18 000 children born each year in South Australia and 1 in 800 having a detectable disorder, a 2% missed screening rate means there is the potential to miss a child with a serious detectable disorder every other year.
This was on the bottom of a review undertaken in 1999 on the uptake. So the upshot of women having informed choice is that 1 child a every other year MAY be caught out as having a problem. Plus the 1 in 800 is a positive test which leads to more tests to actually diagnose any illness, they have a false positive result.
This is quoted from : A Compendium of Resources on Newborn Screening Policy and System Development Including references from Serving the Family From Birth to the Medical Home-Recommendations from the Newborn Screening Task Force
Consequently, on average, there are more than 50 false-positive results for every true-positive result identified through newborn screening in the United States. CONCLUSIONS: The magnitude of false-positive results generated in newborn screening programs, particularly for congenital endocrinopathies, presents a great challenge for future improvement of this important public health program. Attention must be given to improved laboratory tests, use of more specific markers, and better risk communication for families of patients with false-positive test results
Plenty of women have so much trauma when it’s done at the hospital that they never want to go there again, and although you really hardly notice if you have your baby in your arms and are happy to start feeding if necessary you have the choice.
I read that they don’t use it for any testing with your name on it. Well I know for a fact they use it. They just do it anonymously. Plus it is the biggest DNA bank in the world.
Storage of blood spot cards The newborn screening cards are securely stored for 50 years as recommended by the National Pathology Accreditation Advisory Council of Australia. Information regarding individuals tested and test results are held within the Women’s and Children’s Hospital in accordance with the Department of Human Services Privacy and Confidentiality codes. Occasionally, researchers seek access to the blood-spot samples for research purposes. This is only permitted if samples cannot be identified by name and the study has been approved by the Women’s and Children’s Hospital Ethics Committee.
(Flinders medical centre South Australia)
Each family has to weigh up the pro’s and con’s of this test and decide if there is an advantage of having the test over the disadvantage. I have no opinion either way so I don’t try and persuade or dissuade them.
The most important thing is it’s a choice.
Here is an interesting article on the benefits and risks of testing for CF
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Wow. I re-read your article twice to be sure I was reading it correctly. You dont think the heel prick test should be mandatory??
Im a mum to 3 little boys with HCU, which is a lot like PKU. If not picked up in the heel prick test, my little ones would probably have suffered awfull side effects, and most certainly at least one of my boys would have died before the age of 2.
Instead, we know to feed them a low protein diet – basically Vegan – and they are perfectly normally and healthy.
If given a ‘choice’ about the heel prick test, i may well have chosen not to do it. Instead, it was presented to me as something I HAD to do… thank God…
I don’t think the heel prick should be mandatory. I think it’s up to everyone to decide for themselves knowing the pro’s and con’s and realising they have to live with every decision they make.
I think the biggest issue is the lack of informed consent. Too many things at hospitals are shoved under our noses and expected to be signed, without any credible information being presented and explained with them. I’m a law student (no flames please…) and from our experience with the public hospital system i know we weren’t given any information about the heel prick test, just told that it was mandatory.
It should be possible to separate the screening part of the test from the long term storage.
I’m ok with screening, but NOT ok with long term storage and re-use of my childrens genetic data without my (or their) knowledge or specific consent. There is no inferred consent to long term storage and further use inherent in the initial screening test anyway, but nobody has thought about the legal ramifications of that.. yet!
I just found this from a website regarding still birth… does this mean that we can avoid the heel stick if you use the placental cord blood immediately? .. here most homebirthers wait 6 days to test though…
“Guthrie card. Where permission for an autopsy has been declined, parents should be asked if blood can be taken for the Newborn Screening Guthrie Card that is requested for all babies in Australia. This blood could be drawn from a heel prick or from the cut end of the umbilical cord of the placenta”
They have lots of failed tests when you take blood that early because the baby need to have established some feeding. It’s the most common reason for a positive test.
In the US they do a lot of tests and tx that are not warranted. The PKU is a good example. They do it in the hospital but as Lisa pointed out, it is not accurate until the baby is ingesting food. But they still do it to cover their a**. They also worry that the mom wont bring baby in at 2 weeks to have the test done. It is like the practice of abx in the eyes of every newborn at birth. Done to all to protect a few. If you are not a high risk mom, why subject your baby to that? You can decline it, as I did, but they do not like it. Actually made me bring silver nitrate home with me (what they used to use). Immunizations are the same. Rather than space them out so that baby is not bombarded with tons of immunizations at once, they will give a baby up to 4 injections, some of which contain more than one immunization in the shot. This is bad not only because hello, who wants 4 shots? But also because their immune systems go into overdrive trying to deal with all of that at once. So while I am pro-PKU and pro- immunizations, I don’t like the way we are all forced into complying because of a few dead beat parents that do not follow up with doc appointments. However, it is important for me to point out that none of these tests or immunizations are mandated in the states. Parents always can decline them. Many do decline but then you run into issues with starting school-need immunizations to start-but can get around it if you state religious beliefs.