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Richman Wee

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The creation of a virtual databank containing DNA of all New Zealanders raises ... i.e. in a position to adopt new and coming developments re genetic testing ... – PowerPoint PPT presentation

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Title: Richman Wee


1
Richman Wee University of Otago
2
Quick Scan of Relevant News of Interest from
across the Tasman
Western Australia New South Wales Victoria
3
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
theres actually been children fathered by the
biological father (ABC, 2003
http//www.abc.net.au/cgi-bin/common/printfriendly
.pl?/catalyst/stories/s867619.htm)
4
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.
5
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
brothers 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.
6
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 Years 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
7
The (Melbourne) Age Editorial For good or bad,
its 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)
8
The Age (cont.)
The law as it stands is inadequate to satisfy
peoples 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.
9
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 peoples
samples could be improperly exploited or used
against them.
10
And in New Zealand .
11
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
12
T v S 2005 NZFLR 466
Civil proceedings paternity issues
While proceedings were underway, Ms T (mother
of E) obtained Es Guthrie card and presumably
destroyed it. 30 March 2001
13
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.
14
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
15
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.
16
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)

17
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
18
what is not dealt with today Hear us present
at the Dunedin February 2006 Bioethics Conference
  • CONSENT (!!!)
  • re
  • collection of sample
  • use of cards (health-related contexts)
  • who can use?
  • who to ask?
  • use in what circumstances?
  • - quality assurance
  • - research
  • - public health studies
  • retention
  • return or destruction
  • ownership custodianship/guardianship

19
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

20
Variety of possible uses of the Cards
  • Police investigation
  • Criminal proceedings
  • Civil proceedings
  • Coroners 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)

21
Variety of possible uses of the Cards
  • Establish facts/evidence in court
  • Treat or provide health care, including directly
    related purposes
  • Research
  • Other purposes not within the scope of any of the
    above

22
Variety of possible uses of the Cards
  • Establish facts/evidence in court
  • Police investigation
  • Criminal proceedings
  • Civil proceedings
  • Coroners court
  • 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
  • Research
  • Health research cf. Research involving human
    participants
  • Other kinds of research
  • Other purposes not within the scope of any of the
    above
  • Natural disaster (identification)

23
Possible range of legal ways to access Cards
  • Judicial
  • Legislation (Statute or Delegated Legislation)
  • Between organisations/individuals (backed by
    Common Law and legal means)

24
Possible range of legal ways to access Cards
  • Judicial
  • Court order, including search warrant
  • Declaratory judgment (?)
  • Courts inherent jurisdiction and Law of
    Evidence
  • Legislation (Statute or Delegated legislation)
  • Specific statutory provision
  • Subject to general provision(s)
  • 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

25
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
  • Twin consideration of what the following would
    (or should) be like
  • a. Security of the programme
  • b. Reassurances in place
  • Ranking priorities Centrality and Primacy of
    Purpose

26
Centrality and Primacy of Purpose ? Some
decisions to make . Lets bite the bullet
  • Establish facts/evidence in court
  • Treat or provide health care, including purposes
    directly related to that
  • Research
  • Other purposes, e.g. for identification, not
    within the scope of any of the above

27
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)

28
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
29
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! Dont mess with the
Cards ! ...or access only under specific
statutory provision, or by court order in
exceptional circumstances
30
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_at_otago.ac.nz
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