History of Surrogacy - National Centre for Research on Europe

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Regulation of and Consultation
on Assisted Human Reproduction
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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
1
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
2
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
3
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
4
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
5
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
6
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
7
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
8
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
9
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
10
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
11
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
12
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
13
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
14
History of Surrogacy (cont)
• 1997
– NECAHR approves principle of noncommercial surrogacy
– NECAHR approves first case of surrogacy
Technologies, Publics and Powers,
Akaroa, Feb. 2004
15
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
16
History of Surrogacy (cont)
• 2002
– Revised guidelines published
• 2003
– Draft SOP prohibits commercial surrogacy
Technologies, Publics and Powers,
Akaroa, Feb. 2004
17
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
18
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
Technologies, Publics and Powers,
19
media.”
Akaroa, Feb. 2004
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
20
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
21
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
22
Role of Public in Decisionmaking
• Controversy in THES re Lord Winston’s
views (December 2003/January 2004)
Technologies, Publics and Powers,
Akaroa, Feb. 2004
23
Role of Public in Decisionmaking
• 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
24
Role of Public in Decisionmaking
• 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
25
Role of Public in Decisionmaking
• 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
26
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
27
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