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Joined: 05 Nov 2003
Posts: 814
Location: Auckland, New Zealand
Posted: Mon Oct 03, 2005 2:56 pm Post Subject: Legislation and the Guthrie blood test cards
I heard several mentions on the radio this morning about agreement being close on legislation related to the Guthrie blood test - normally carried out within the first few days of a child being born. Samples are taken from a heel prick and are sent for screening to identify indicators for 7 disorders. Overseas in countries like Australia, they screen for 30 disorders. The screening programme began in 1969 and apparently around 1.9 million samples are currently being retained.
The information provided to mothers has apparently been poor, many do not realise the cards are stored indefinitely or that they can be accessed by third parties. Information on the fact that the procedure is voluntary and procedures for appealing for the cards' return has also been confusing.
There are obvious concerns about privacy and their potential use to create a DNA data bank for every citizen. There were calls some time ago for legislation to be written to better define what can and cannot be done. In the radio mentions, they didn't really clarify exactly what the legislation was going to do, one way or the other - they just said they were close to agreement about police access. Oddly, I can't find any articles online about it either.
If anyone comes across anything on the subject, please post a link. Here's some general info.
As has been pointed out before (Elkin and Jones) the leaflet “does not present screening as a choice but as something that will happen.” I observe also that it does not adequately explain the reasons for retaining the sample, nor the uses to which theretained sample may be put. It does mention that the sample card can be returnedafter testing, but does so in a way which is both misleading (it implies that the request for return must be submitted at the time that the sample is initially sent to in fortesting, and is silent as to whether a later request for return will be acted upon) and imposing an impracticable requirement (it asks for a letter requesting return of thecard to be sent to the Centre “with the test card” but the card has to be sent in by the LMC daily and the mother would not often have time or facilities to write that letterwithin the short time frame purportedly available).
I heard this on the radio as well Melody. I scanned scoop yesterday but there was no information...very strange....
Perhaps they were referring to legislation in Australia?
Joined: 05 Nov 2003
Posts: 814
Location: Auckland, New Zealand
Posted: Tue Oct 04, 2005 12:03 pm Post Subject:
lyra wrote:
Perhaps they were referring to legislation in Australia?
No, it was definitely New Zealand they were talking about.
The lack of other coverage though is strange. Maybe National Radio jumped the gun a bit on the significance of it or something.
This is a green party statement about it from 2001. Note that they say it was only a recent development back then, that doctors even asked parents for consent for "the taking and storage of their baby's blood sample, meaning up to a million New Zealanders have had their DNA recorded without their knowledge."
Joined: 05 Nov 2003
Posts: 814
Location: Auckland, New Zealand
Posted: Tue Oct 04, 2005 6:54 pm Post Subject:
Deano wrote:
Thats fascinating Melody, all babies since 1969 have DNA stored in the NZ database. Thats me...just!. Who has access to this information Melody??
Well as I understand it, it's not DNA per se - it's blood that can potentially be subject to DNA analysis. In terms of access I think that's what the legislation will determine and regulate more specifically. From what I can tell, it has been fairly unregulated for some time and the calls for legislation may be to address concerns. I think the police do, and possibly parents (say in the case of a paternity dispute), but I am still trying to find out. That Herald article from 2003 doesn't actually define "third parties".
:) I was born in 1968 - phew! - but hold on....
In talking with some of our older associates, it seems that it may in fact go back a little further than 1969. Some of them remember their babies born in 1965 going through the same test (perhaps they only starting storing the cards in 1969?)
THE GUTHRIE PRICK- IS IT THE ARCHILLES HEEL OF PRIVACY?
Hi all,
Melody Anderson wrote:
Yes. I would still be interested to know what the proposed changes to the legislation will actually allow the police to do (and not to do) with the Guthrie samples.
I will try to answer the above issue for you, bearing in mind that these are my opinions only.
First off, I doubt there will be any legislative change to allow Police carte blanche access to the Guthrie blood samples. This will merely be a Memorandum of Understanding between Police and the Ministry of Health’s National Screening Unit (NSU) in respect of the Guthrie samples, which by all accounts seem to be in disarray.
A Memorandum of Understanding is purely an inter-departmental agreement between the signatories, in this instance the Police and the NSU, which will outline protocols as to access etc of the Guthrie samples. A Memorandum of Understanding is not statutory law.
This Memorandum of Understanding should be made public. However, the contents I suspect will only contain mundane protocols i.e. one person contact, ring between 10am and 2pm for service, we don’t do weekends and to whom do we send the bill? If lucky there may be reference made to protecting individuals’ privacy. (Sorry, me being cynical)
In fact the Memorandum of Understanding may well tighten things up. To obtain such samples, Police must act within the current laws as set out in various enactments. Any Memorandum of Understanding agreed to can not override statutory law.
Part of Police core business is to detect and apprehend perpetrators of crime. During “serious crime” investigations Police will use every legal means at their disposal to identify these perpetrators and put them before the court system.
During crime scene examinations Police may recover evidence including biological evidence such as blood, seminal fluids, saliva etc for DNA sequencing and checking against the National DNA Databank (NDD).
At this stage the DNA sample may be matched to a known person on the NDD, the classic break through. If not, the DNA fingerprint will be stored on the NDD and periodically checked against new DNA fingerprints.
Police may have a prime suspect whose DNA fingerprint is not stored in the NDD. At this stage the Police may request a voluntary sample from the suspect which he may or may not give, of course he is not obliged to give one. However if the offence is an indictable one (carrying 3 years imprisonment or more) Police may seek a compulsion order from a judge to obtain one.
Similarly it may be necessary for Police to obtain voluntary DNA samples from victims, witnesses etc in a process of elimination and to isolate the DNA fingerprint of the perpetrator.
The perpetrator may be one who is unknown to Police and has no DNA profile on the NDD, the classic “who done it” as in Operation Park, the hunt for the South Auckland serial rapist (Joe Thompson) See Link. This is where Police really put in the hard yards.
However, the crime scene DNA fingerprint can tell a partial story in itself and can be narrowed down to gender of origin and to a lesser degree ethnic origin. DNA can also be used by forensic scientists to determine parentage. This is obviously a very complex area. More can be read here:
Sometimes Police are confronted with an unknown deceased victim who maybe in advanced stages of decomposition, mutilated or burned beyond recognition (as the Americans say a “John/Jane DOE). To make identification, armed with what little information they may have obtained from the scene or using missing person reports etc it may be necessary for them to DNA sample relatives to determine parentage. In extreme cases this probably would involve Police obtaining Guthrie blood samples from the NSU.
For Police to obtain a Guthrie blood sample from the NSC would require them to obtain a search warrant pursuant to the Summary of Proceedings Act 1957 with a sworn affidavit outlining the facts. If the Guthrie blood sample applied for related to a suspect, the Police must have “good cause to suspect” which would also be outlined in the sworn affidavit. If a judge is satisfied with the Police facts then a warrant for the Guthrie sample(s) would be issued.
Of course the NSU could refuse to hand over the Guthrie blood sample. The Police would then apply for a Subpoena from the High Court requiring NSU to release the specified samples.
I certainly appreciate that the 1.9 million Guthrie samples would be an asset to agencies such as Police and forensic experts tasked with mass Disaster Victim Identification i.e.; the likes of Erebus, a mega tsunami or the touted H5N1 bird flu pandemic. I hope they never have to be used for this purpose, but could form part of the Memorandum of Understanding.
The Guthrie samples are voluntary and can be withdrawn by the donor from the NSU Database at any time.
I found this particular paragraph in the TV One article bizarre if not disturbing to say the least.
Quote:
The commissioner called for urgent action because a rising number of parents have been withdrawing their children's samples over concerns the police or others could access them without consent
What the #%$@…. “Access without consent”………come on………..MOH/NSU…..lock your drawers you dolts.
“Police and others”………………….well, well………..who are these "others" alluded to then, the cleaners, pharmaceutical companies, intelligence agencies……..?
My alarm bells will start ringing when the state proposes legislation to make the Guthrie blood samples compulsory and/or to be included in the NDD, and so should yours!
A few interesting thoughts from the pioneer of DNA fingerprinting, Professor Sir Alec Jeffreys.
Quote:
Monday April 11, 2005
Everyone in the world should have their genetic profile stored on a database, but the information should be held independently of the authorities, according to the pioneer of DNA fingerprinting.
