11 responses to “New Born Screening 2”

  1. WiseWoman

    Thanks for this (and the previous article on PKU tests), Lisa. I'm going to copy them and give them out to clients making this choice, too.

    I rarely have clients who refuse the test and I feel the same way as you do about submitting a blank card to report them.
    Gloria in Canada

  2. brenda

    Thanks for this blog Lisa.

    Whenever I present the info to parents about the NST and the storage off site (at a 'secure' location) of their baby's identified DNA for 25 years……………it generates discussion between parents.
    Some seek further info.

    Isn't this what us having information is all about ?
    Sharing it and then the parents making an informed choice….. the outcome of which parents must take responsibility for.

    Like you, I don't have definite opinion either way, I am not emotionally invested in the testing.
    I just present the data.

    The information re storage of data & access to it is clearly stated in the Genetic Health Services Vic handout which all parents are given when booking in to hospital ( & I would hope IPs provide women with it also).
    It's entitled 'Newborn Screening Program for your Baby'.
    I'd hope that parents choose to read the information BEFORE consenting to the test !

    Brenda M

  3. Ash, Gina, Mia, Tarka and Willow.

    Hi Lisa.
    I have just discovered your blog and think it may become my main source of inspiration! I am in the process of setting up as an independent midwife back in England, after completing my training in Swansea. Just wanted to say keep up the good work.
    Ash.

  4. Anonymous

    Hi All
    I am not a midwife, but I work in the area of Newborn Screening. Screening is definitely in the best interests of the child – the other 'stuff' is secondary and really needs to be presented that way. This is where things have come unstuck. Midwives haven't been given enough information and therefore, parents haven't either. In most places, the storage of cards is required by law, but there are options for parents to request their card back. Parents also have the right to prohibit the card being used for research if they so choose. The storage and use of cards really should not prevent parents from having their child screened. As with most things, it all comes down to education and receiving quality information. :-)

  5. Lisa Barrett

    I think I accidently deleted this.

    Hi All
    I am not a midwife, but I work in the area of Newborn Screening. Screening is definitely in the best interests of the child – the other 'stuff' is secondary and really needs to be presented that way. This is where things have come unstuck. Midwives haven't been given enough information and therefore, parents haven't either. In most places, the storage of cards is required by law, but there are options for parents to request their card back. Parents also have the right to prohibit the card being used for research if they so choose. The storage and use of cards really should not prevent parents from having their child screened. As with most things, it all comes down to education and receiving quality information. :-)

    Sorry about that anonymous, thank you for your comment.

    You are right education and quality information is important. Trouble with government agencies is that it is only educational and quality if it gains complience to what they want. Hasn't it occured to you that what you say may not make a woman want this test?

    Whether or not it is the law to keep the cards, the truth is, they are used for research purposes and even if returned the data is stored before hand.

    I find it amusing that it is always assumed that midwives haven't received the correct information and neither has the woman. Google it, there is plenty of supportive information out there. There again women and midwives must be just thick.

  6. Anonymous

    Hi Lisa
    I accept your comment about Govt agencies and the educational material they produce. I also fully accept that by telling parents about the storage and the access issues, they may choose to opt out of screening. But if they are informed of their options, they shouldn't have any reason to opt out – apart from a pure desire not to participate in screening, which they are entitled to do (in Australia anyway). They are entitled to say no to research and they can get their card back.
    In my state, a tiny number of cards (1%) are used for research and this is done with parental consent. I acknowledge this is not the case in all states and countries. Once the card is returned to parents, there is no blood left in the lab with which to do research. The results data are stored – again by law, as with breastscreen, bowelscreen, papscreen…the electoral role…the Govt has all this data, it's no different.
    With regard to 'assuming' midwives haven't received the correct information, the work I have been doing has been based on research and personal statements from midwives who state they ARE lacking appropriate information – no assumptions made. I'm sure midwives vary across the board in their knowledge levels – as does every professional. I in no way meant to infer that women and midwives were 'thick'. If you want to lay blame for lack of or mis-information, it should go towards the Govt as the funding agent for this program.
    I work with midwives on a daily basis and I think they are fantastic. They are overworked and underpaid, but they love their jobs.
    It's funny actually, the concern that is raised around card storage and access. In the next 5 years technology will provide us with the ability to genetically profile every baby at birth, for treatable and non treatable conditions. I think this stuff is more worthy of concern and debate than anonymous population based research using old bloodspots.

  7. Lisa Barrett

    genetically profiling every baby at birth To me sounds horrendous. But now the population is socialised to having a baby's blood taken after birth, it will slide in unnoticed. it could become manditory and most people wouldn't see the big picture. Just like yourself they believe that if you were really informed then you wouldn't decline.

    There are others like me out there, I have issues with storing any information of this sort

    Your comment says you understand they may opt out but if they are informed they have no reason to.

    THIS is a big problem to me. You really believe that if you give the information your way nobody would say no.

    I'm interested in the state you are in so that I can follow up the parental consent. I understand that if there is no ethics panel involved there is no need for parental consent.

    The midwives lacking information are those midwives at the hospital who do this screening without even knowing why let alone any ethical considerations.

  8. Michelle

    I just ran across this, and the discussion between anonymous and Lisa. I am a mom of 4 homebirthed babies, at least two of which have not been screened. I believe there is a very much ignored point about a mother’s intuition here. I knew that my two babies who we deliberately chose not to screen were fine. I knew in my heart it was not necessary to poke and bleed them. I also knew the others were fine too, but didn’t feel a need to “avoid” the test. I believe there is a reason we are given “intuition” and it is important to listen to it. So, while some people would choose to go along with the test, given the right information, many of us don’t, even with lots of the “right” information, because our intuition leads us well.

  9. LeTara

    I am a midwifery student in the U.S. ..i have had two children, at home and have decided both times to NOT get the blood test done for my babies.. we DO have genetic conditions in my family of which I am aware.. and still do not feel that testing would be advisable… for many reasons. Thank you for this information Lisa .. I have already shared :)

  10. Susan Gill

    Once I heard about the government storing DNA, I found an independant lab (Baylor) in Texas that does newborn screening tests, does not store the DNA, requires less blood and is less than half the cost of the CA screening. I give my clients TRUE informed consent and let them decide. THAT is our job! By the way, about half of my clients still choose to do the CA testing.

    1. LeTara

      susan… do you have to be a licensed provider to use that lab?