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Regulation of and Consultation on Assisted Human Reproduction

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. History of ART Regulation/Consultation. 1984

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Regulation of and Consultation on Assisted Human Reproduction

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  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 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 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 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 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 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. 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 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 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’ 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 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 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? 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 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 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 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 Technologies, Publics and Powers, Akaroa, Feb. 2004

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

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