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 there’s actually been children fathered by the biological father” (ABC, 2003; http://www.abc.net.au/cgi- bin/common/printfriendly.pl?/catalyst/stories/s867619.htm ) 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. “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.” Briody (cont.)

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 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

7. 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.” “… 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) …” “This collection is held by a private but not-for-profit company, Genetic Health Services, Victoria, which has also claimed it owns the cards.”

8. “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 …” The Age (cont.) “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 screening system that has saved lives for four decades is built on a foundation of public trust.” The Age (cont.) “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.”

10. And in New Zealand ….

11. Civil proceedings – paternity issues H v G (1999) 18 FRNZ 572 Order made under R 322 of the High Court Rules permitting DNA analysis using a Guthrie card

12. Civil proceedings – paternity issues T v S [2005] NZFLR 466 While proceedings were underway*, Ms T (mother of E) obtained E’s Guthrie card and “[p]resumably … destroyed” it. * 30 March 2001

13. “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. Sue Kedgley MP Green Party Health Spokesperson 21 st November 2001 “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. “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. Sue Kedgley MP (cont.) http://www.greens.org.nz/searchdocs/PR4902.html “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.

15. “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.” BH Slane, Privacy Commissioner Media Release: Guthrie ‘Heel Prick’ Test Report 25 September 2003 “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. 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) BH Slane, Privacy Commissioner Guthrie ‘Heel Prick’ Test Report 25 September 2003

17. “A blood bank holding genetic material from 1.9 million people is giving an increasing number of samples to ‘third parties’.” NZ Herald Third parties increasingly access material from blood bank DNA 26 November 2003 “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: 1. 1.collection of sample 2. 2.use of cards (health-related contexts)   who can use?   who to ask?   use in what circumstances? - quality assurance - research - public health studies 3. 3.retention 4. 4.return or destruction 5. 5.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 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)

21. Variety of possible uses of the Cards 1. 1.Establish facts/evidence in court 2. 2.Treat or provide health care, including directly related purposes 3. 3.Research 4. 4.Other purposes not within the scope of any of the above

22. Variety of possible uses of the Cards 1. 1.Establish facts/evidence in court Police investigation Criminal proceedings Civil proceedings Coroner’s court 2. 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. 3.Research ‘Health research’ cf. Research involving human participants Other kinds of research 4. 4.Other purposes not within the scope of any of the above Natural disaster (identification)

23. Possible range of legal ways to access Cards 1. 1.Judicial 2. 2.Legislation (Statute or Delegated Legislation) 3. 3.Between organisations/individuals (backed by Common Law and legal means)

24. Possible range of legal ways to access Cards 1. 1.Judicial Court order, including search warrant Declaratory judgment (?) Court’s inherent jurisdiction and Law of Evidence 2. 2.Legislation (Statute or Delegated legislation) Specific statutory provision Subject to general provision(s) 3. 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

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 2. 2.Twin consideration of what the following would (or should) be like … a. Security of the programme b. Reassurances in place 3. 3.Ranking priorities: Centrality and Primacy of Purpose

26. Centrality and Primacy of Purpose  Some decisions to make …. Let’s bite the bullet 1. 1.Establish facts/evidence in court 2. 2.Treat or provide health care, including purposes directly related to that 3. 3.Research 4. 4.Other purposes, e.g. for identification, not within the scope of any of the above

27. 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) BH Slane, Privacy Commissioner Guthrie ‘Heel Prick’ Test Report 25 September 2003

28. “… 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) Victorian Privacy Commissioner Submission to the Forensic Procedures Review Committee on its Review of Part 1D of the Crimes Act 1914 (Commonwealth) 5 September 2002

29. * ? Other purposes  No way! Don’t mess with the Cards !...or access only under specific statutory provision, or by court order in exceptional circumstances STATE OF PREPAREDNESS * Security * Reassurances (newborns of today...) * Guthrie Cards only for health/therapeutic (and directly related) purposes and health research

30. Led by Prof Mark Henaghan, Dean of Law, Otago Sponsored by NZ Law Foundation web: www.otago.ac.nz/law/genomewww.otago.ac.nz/law/genome e-mail: genome.lawpolicy@otago.ac.nzgenome.lawpolicy@otago.ac.nz