1. Technologies, Publics and Powers, Akaroa, Feb. 2004 1 Regulation of and Consultation on Assisted Human Reproduction History of Regulation and Consultation Case study of Surrogacy Role of Media Future consultation in particular areas Role of the public in decision-making

2. Technologies, Publics and Powers, Akaroa, Feb. 2004 2 History of ART Regulation/Consultation 1984 –Request to Government by medical/legal/scientific societies for a Standing Committee on ART –Request by Catholic Bishops for a parliamentary enquiry into IVF

3. Technologies, Publics and Powers, Akaroa, Feb. 2004 3 History of ART Regulation/Consultation(cont) 1985 –Publication by Law Reform Division of Ministry of Justice of report “New Birth Technologies” –Request for submissions

4. Technologies, Publics and Powers, Akaroa, Feb. 2004 4 History of ART Regulation/Consultation (cont) 1986 –Publication of analysis of the 164 submissions, about 25% requesting a ‘watchdog’ committee

5. Technologies, Publics and Powers, Akaroa, Feb. 2004 5 History of Regulation/Consultation(cont) 1987 –Interdepartmental Monitoring Committee on Assisted Human Reproductive Technologies (MCART) established by the Ministry of Justice to act as: i) a repository of information on ART ii) monitor developments ii) advise the Minister

6. Technologies, Publics and Powers, Akaroa, Feb. 2004 6 History of ART Regulation/Consultation (cont) 1987 –Status of Children Amendment Act 1987 passed- clarifies legal parentage of children conceived through ART involving third parties 1990 –RTAC invited by some NZ service providers to accredit NZ clinics. Accreditation requires ethics committee approval of new and innovative practice.

7. Technologies, Publics and Powers, Akaroa, Feb. 2004 7 History of ART Regulation/Consultation(cont) 1991 –Request made by consumer bodies and Ministry of Women’s Affairs for national body to assess ART applications and for legislation to govern ART –Report on ART “Biotechnology Revisited” (commissioned by the Medical Council) published –Manatu Maori Working Party publish paper on guidelines for ART

8. Technologies, Publics and Powers, Akaroa, Feb. 2004 8 History of ART Regulation/Consultation(cont) 1993 –Interim National Ethics Committee on Assisted Human Reproductive Technologies (INECART) established by Minister of Health because of problems experienced by Regional Ethics Committees –Two person Ministerial Committee on Assisted Reproductive Technologies (MCART) established by Minister of Justice –About 100 submissions received

9. Technologies, Publics and Powers, Akaroa, Feb. 2004 9 History of ART Regulation/Consultation (cont) 1994 –MCART Report “Assisted Human Reproduction - Navigating Our Future” published. Report says “it sees no need for legislation to establish a separate NZ licensing scheme.” Recommends: a NZ supplement to RTAC Guidelines Establishment of a ‘Council on Assisted Human Reproduction’

10. Technologies, Publics and Powers, Akaroa, Feb. 2004 10 History of ART Regulation/Consultation(cont) 1995 – INECART reconstituted as the National Ethics Committee on Assisted Human Reproduction (NECAHR) 1996 –Private Members Bill on Human Assisted Reproductive Technologies (HART Bill) introduced (based on UK legislation) –Submissions requested

11. Technologies, Publics and Powers, Akaroa, Feb. 2004 11 History of ART Regulation/Consultation(cont) 1998 –Government introduced the Assisted Human Reproduction Bill (AHR Bill) –Submissions requested 2000 –Select Committee hearings held

12. Technologies, Publics and Powers, Akaroa, Feb. 2004 12 History of ART Regulation/Consultation(cont) 2003 –Government introduced the SOP to HART Bill –Submissions requested –Select Committee hearings held 2004 –Report of Select Committee? –Passage of legislation?

13. Technologies, Publics and Powers, Akaroa, Feb. 2004 13 History of Surrogacy 1987 –Status of Children Amendment Act clarifies legal parentage of children conceived through the use of donated, artificially introduced gametes 1990 –First NZ legal decision on a case involving surrogacy –IVF surrogacy using donor eggs attempted (unsuccessfully) without ethics approval

14. Technologies, Publics and Powers, Akaroa, Feb. 2004 14 History of Surrogacy (cont) 1994 – Application to INECART by clinic for ethical approval for ‘compassionate’ surrogacy declined due to lack of legal and policy frameworks –MCART Report critical of INECART’s refusal of ethical approval for ‘compassionate’ surrogacy and recommends clinic reapplies –Clinic reapplies and application again declined

15. Technologies, Publics and Powers, Akaroa, Feb. 2004 15 History of Surrogacy (cont) 1997 –NECAHR approves principle of non- commercial surrogacy –NECAHR approves first case of surrogacy

16. Technologies, Publics and Powers, Akaroa, Feb. 2004 16 History of Surrogacy (cont) 1998 –Draft Guidelines on surrogacy sent to infertility clinics 2001 –Guidelines for surrogacy revised after consultation with clinics and other interested organisations/persons

17. Technologies, Publics and Powers, Akaroa, Feb. 2004 17 History of Surrogacy (cont) 2002 –Revised guidelines published 2003 –Draft SOP prohibits commercial surrogacy

18. Technologies, Publics and Powers, Akaroa, Feb. 2004 18 Media Interest, 2003 Newspapers –Requests for information Radio –National radio with Linda Clark –Comment on other news programmes Television –Holmes Show (Surrogacy) –Documentaries (Surrogacy/PGD)

19. Technologies, Publics and Powers, Akaroa, Feb. 2004 19 Role of the Media Interview with Leah Oakes on Nine to Noon 18 December 2003 Linda Clark “ I’m presuming you went public because you felt you had no other option?” Leah Oakes “Oh absolutely. We were pushing them. We said we don’t believe that they have a right to actually do this to us and I don’t believe we would have gotten the result we got without using the media.”

20. Technologies, Publics and Powers, Akaroa, Feb. 2004 20 Public Consultation,2004 Guidelines for Pre-Implantation Genetic Diagnosis –Release of Discussion paper and draft Guidelines (paper and web) –Written submissions –Public Hearings –Focus Groups

21. Technologies, Publics and Powers, Akaroa, Feb. 2004 21 Public Consultation, 2004 Guidelines for Embryo Donation for Reproductive Purposes –Release of Discussion paper and draft Guidelines, paper and web –Written submissions –Public hearings

22. Technologies, Publics and Powers, Akaroa, Feb. 2004 22 Public Consultation, 2004 Report on Embryo Research to be submitted to the Minister of Health with a request that it be released for public discussion

23. Technologies, Publics and Powers, Akaroa, Feb. 2004 23 Role of Public in Decision- making Controversy in THES re Lord Winston’s views (December 2003/January 2004)

24. Technologies, Publics and Powers, Akaroa, Feb. 2004 24 Role of Public in Decision- making Colin Blakemore, THES 12 December 2003, p3 “Would Lord Winston be happy for embryo research to be regulated on the basis of a poll where only 30% of people voted?” Lewis Wolpert ibid “Where there are technical issues, one should listen and be aware of public concerns but we shouldn’t let them decide whether we can use stem cells for research.”

25. Technologies, Publics and Powers, Akaroa, Feb. 2004 25 Role of Public in Decision- making Lewis Wolpert THES December19/26 2003 p18 “There are, I recognise, a few ethical issues in relation to research with which the public are concerned and should be involved, such as the use of human embryos. But the decision on such issues rests with Parliament. One may not like its decisions, but that is the nature of a democracy - power rests with our elected representatives. The same principles apply to applications of science, such as using stem cells and therapeutic cloning for treating patients, and genetically modifying plants.”

26. Technologies, Publics and Powers, Akaroa, Feb. 2004 26 Role of Public in Decision- making Lord Winston, THES January 2 2003, p15 “I am not suggesting that the public control science or, ultimately, decide which research is done. That is the domain of the scientists, though funding bodies need to ensure that sufficient relevant research is conducted to meet the particular needs of society. While the public should not control what science is undertaken, they should certainly have a major input into how scientific knowledge is generated and, with government, should decide what and how technology is used.”

27. Technologies, Publics and Powers, Akaroa, Feb. 2004 27 Lord Winston THES January 2 2003 p15 (cont) “We must engage with society to develop more dialogue. This will be difficult as it requires a huge change of our thinking. But dialogue works - one rare example where controversial science was accepted was the case for embryo research. We showed its potential benefits, demonstrated strong ethical values and an absence of commercial motive, and the public and then parliament voted overwhelmingly in favour.”