New Zealand Newborn Screening Programme: Reinforcing

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Richman Wee
University of Otago
Quick Scan of Relevant News of Interest
from across the Tasman
Western Australia
New South Wales
Victoria
The Effects of DNA Evidence on the Criminal Justice
Process
School of Criminology and Criminal Justice, Griffith University
Michael Briody, PhD Thesis November 2004
“…in Western Australia, police accessed [in 1997] these cards
without consent.”
“Detective Sergeant Gary Fraser obtained a search warrant for (sic)
the Perth hospital, later commenting:
‘This is the worst case that I have been involved in –
involving incestuous behaviour – very extremely tragic
where the father targeted his own biological daughters and
there’s actually been children fathered by the biological
father”
(ABC, 2003; http://www.abc.net.au/cgibin/common/printfriendly.pl?/catalyst/stories/s867619.htm)
Briody
(cont.)
“Detective Fraser wanted DNA samples to prove the man was
father to his own grandchildren, but no one in the family would
consent, as the family, especially the daughters, lived in fear of the
man. Having obtained the DNA samples from the Guthrie cards,
Detective Fraser successfully prosecuted the offender, breaking
the cycle of incest.”
“Following these events, the Perth hospital made the controversial
decision to destroy the Guthrie card databank [as it existed then],
retaining cards for only two years after birth.”
Briody
(cont.)
“An argument for retention of the cards on medical groups was
provided by Sydney resident, Michael Easton, whose brother died
of cystic fibrosis.”
“… When Easton wished to marry, he was unsure if he carried the
fatal genetic mutation, which he did not wish to pass on to his own
children.”
“Doctors retrieved a sample from the deceased brother’s Guthrie
card, and after testing, were able to assure Easton that he did not
carry the gene. However, had he lived in Western Australia there
would have been no Guthrie card to test.”
Sydney Morning Herald
‘Frightening glimpse of future police state’
April 7, 2000
“The largest DNA mass-screening project ever attempted in
Australia is expected to cost about $60,000 when police tomorrow
take saliva swabs from the adult male population of Wee Waa.”
“… the Minister for Police … said the voluntary testing of 600 men
in the town to try and solve the 1999 New Year’s Day bashing and
rape of a 93-year old [91-year old?] woman was an operational
decision taken by local police and was supported by the town.”
Reported by Linda Doherty and Ellen Connolly
The (Melbourne) Age
Editorial: For good or bad, it’s in the blood
July 7, 2004
“The law is lamentably weak in regulating the power of a DNA
record of 2 million Victorians.”
“This collection is held by a private but not-for-profit company,
Genetic Health Services, Victoria, which has also claimed it owns
the cards.”
“… whether the state, which pays for screening, should give a
company, however ethical it may be, effective control of card
storage and access. Genetic Health plays down the question of
ownership (despite the huge commercial value of population
genetic data) …”
The Age
(cont.)
“The law as it stands is inadequate to satisfy people’s concerns
about the collection of material that could reveal so much about them
– whether this be to doctors, researchers, police, employers or
insurers …”
“It is not good enough only to tighten up the contract with
Genetic Health; all the grey areas of consent, ownership, storage,
access and protection of genetic information must be cleared up.”
The Age
(cont.)
“The screening system that has saved lives for four decades is built
on a foundation of public trust.”
“To protect the program and the invaluable genetic resource it has
accumulated, the law must lay to rest any fears that DNA in
people’s samples could be improperly exploited or used against
them.”
And in New Zealand ….
H v G (1999) 18 FRNZ 572
Civil proceedings – paternity issues
Order made under R 322 of the High Court Rules
permitting DNA analysis using a Guthrie card
T v S [2005] NZFLR 466
Civil proceedings – paternity issues
While proceedings were underway*, Ms T (mother of E) obtained
E’s Guthrie card and “[p]resumably … destroyed” it.
* 30 March 2001
Sue Kedgley MP
Green Party Health Spokesperson
21st November 2001
“The tests obviously serve a valuable function in screening
babies, but the present system of storage and retrieval is open
to abuse and misuse,” said Ms Kedgley.
“There is no justification for keeping the samples after the child
has reached adulthood. The creation of a virtual databank
containing DNA of all New Zealanders raises serious legal and
ethical questions.”
Sue Kedgley MP
(cont.)
“Medical experts contend that the DNA material is useful for
research purposes, but to what end? What safeguards have
we that such material cannot be used in GE experiments or for
genetic testing,” she asked.
“The Privacy Commissioner is sufficiently concerned about the
practice to mount his own investigation What I am calling for is
public and parliamentary debate about the issues involved,”
said Ms Kedgley.
http://www.greens.org.nz/searchdocs/PR4902.html
BH Slane, Privacy Commissioner
Media Release: Guthrie ‘Heel Prick’ Test Report
25 September 2003
“It is fortunate that the testing centre has been well managed.
However, no specific laws covers the operation of the
programme, or the retention of the samples. As a
consequence, there is no adequate legal protection for the
samples against access by third parties or against future
uses.”
“I recommend:
… [that] rules, and any permission-granting structures they
involve, be incorporated in legislation in such a way that they
are clear, robust and enforceable. ”
BH Slane, Privacy Commissioner
Guthrie ‘Heel Prick’ Test Report
25 September 2003
Paragraph 9.5
“…I am concerned that it has been left to stand up alone and
without formal protective barriers against potential demands
for access to the growing bank of sample material which it
holds.”
(emphasis added)
NZ Herald
Third parties increasingly access material from
blood bank DNA
26 November 2003
“A blood bank holding genetic material from 1.9 million people
is giving an increasing number of samples to ‘third parties’.”
“The National Testing Centre in Auckland has been storing
baby blood for 30 years, and has genetic material from half of
all New Zealand.”
“Figures obtained by the Herald show the number of times the
samples are accessed by ‘third parties’ has leaped from just
one in 1995 to a projected 1000-plus this year. Most of the
surge comes from parents …”
what is not dealt with today … Hear us present at
the Dunedin February 2006 Bioethics Conference
‘CONSENT’ (!!!)
re:
1. collection of sample
2. use of cards (health-related contexts)

who can use?

who to ask?

use in what circumstances?
- quality assurance
- research
- public health studies
3. retention
4. return or destruction
5. ownership … custodianship/guardianship
Some thoughts ...
State of preparedness
 i.e. in a position to adopt new and coming developments re
genetic testing technologies
What model?
 what would be a really good current model to modify, improve
and build on?
The Goal
 a model that would satisfy the highest standards of law &
ethics, and consumer or community needs and expectations
 from a policy viewpoint - well thought through in advance and
well-designed
Variety of possible uses of the Cards
Police investigation
Criminal proceedings
Civil proceedings
Coroner’s court
Benefit to the individual patient/health consumer
(cf. benefit to a relative re reproductive decision-making?)
Public health
‘Health research’ cf. Research involving human participants
Other kinds of research
Natural disaster (identification)
Variety of possible uses of the Cards
1. Establish facts/evidence in court
2. Treat or provide health care, including directly related purposes
3. Research
4. Other purposes not within the scope of any of the above
Variety of possible uses of the Cards
1. Establish facts/evidence in court
Police investigation
Criminal proceedings
Civil proceedings
Coroner’s court
2. Treat or provide health care, including directly related purposes
Benefit to the individual patient/health consumer
(cf. benefit to a relative re reproductive decision-making?)
Public health
3. Research
‘Health research’ cf. Research involving human participants
Other kinds of research
4. Other purposes not within the scope of any of the above
Natural disaster (identification)
Possible range of legal ways to access Cards
1. Judicial
2. Legislation (Statute or Delegated Legislation)
3. Between organisations/individuals (backed by
Common Law and legal means)
Possible range of legal ways to access Cards
1. Judicial
Court order, including search warrant
Declaratory judgment (?)
Court’s inherent jurisdiction and Law of Evidence
2. Legislation (Statute or Delegated legislation)
Specific statutory provision
Subject to general provision(s)
3. Between organisations/individuals
By agreement, eg Memorandum of understanding,
Confidentiality agreement
Reliance on general law (would be legally tested ex post facto)
… eg fiduciary duty, duty of care
Some thinking, and decisions, that may have to
(should?) happen soon
In terms of legal, ethical and policy design:

State of Preparedness
eg in light of new and coming developments in technology
2. Twin consideration of what the following would (or should) be
like …
a. Security of the programme
b. Reassurances in place
3. Ranking priorities: Centrality and Primacy of Purpose
Centrality and Primacy of Purpose
 Some decisions to make …. Let’s bite the bullet
1. Establish facts/evidence in court
2. Treat or provide health care, including
purposes directly related to that
3. Research
4. Other purposes, e.g. for identification, not
within the scope of any of the above
BH Slane, Privacy Commissioner
Guthrie ‘Heel Prick’ Test Report
25 September 2003
Paragraph 9.5
“…I am concerned that it has been left to stand up alone and
without formal protective barriers against potential demands
for access to the growing bank of sample material which it
holds.”
(emphasis added)
Victorian Privacy Commissioner
“… If genetic information is to be made available to third parties or
for purposes unrelated to the criminal investigation purpose for
which the DNA database was said to be originally established, any
expansion (or ’function creep’) should be specifically and in every
case subject to the legislative power of the Parliament and not be
left to be determined by a decision of the Executive, by
Memorandum of Understanding or other instrument of Ministerial
councils, by regulations, by private agreement or by the parliaments,
the executive governments or the policy of other jurisdictions.”
(emphasis added)
Submission to the Forensic Procedures Review Committee on its
Review of Part 1D of the Crimes Act 1914 (Commonwealth)
5 September 2002
STATE OF PREPAREDNESS
* Security
* Reassurances
(newborns of today ...)
* Guthrie Cards only for
health/therapeutic (and directly
related) purposes and health research
* ? Other purposes  No way! Don’t mess with the Cards !
...or access only under specific statutory provision, or by
court order in exceptional circumstances
Led by Prof Mark Henaghan, Dean of Law, Otago
Sponsored by NZ Law Foundation
web: www.otago.ac.nz/law/genome
e-mail: genome.lawpolicy@otago.ac.nz
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