[Synopsis only] Disability in the Catholic Intellectual Tradition since the Second Vatican Council
Zach Duke examines how disability was perceived in Catholic thinking prior to and after the Second Vatican Council. This piece highlights St Thomas Aquinas’ reflection; a creature by its very existence gives glory to God. More recent reflections on the ‘dignity’ of all human persons provide a theoretical framework for all persons, including those living with a disability, to be welcomed and respected unconditionally. Pope Francis’ openness and comfort in the presence of those with disabilities shows how the rhetoric of earlier times can be lived out in practice.
The full article is available by subscription to The Nathaniel Report
A Cannabis Referendum Starter Kit
by Deborah Stevens and Lynne Bowyer
At the same time as the 2020 General Election, a binding referendum is to be held on the legalisation of cannabis for personal use. The referendum will consider both medicinal and recreational use of cannabis. The debate between pro- and anti- cannabis law reform has already begun in the media and this will only intensify over the coming months. It is important that people are well informed, understand the terms used in the debate, and consider as thoughtfully as possible the impact of any law changes on individuals and communities.
The purpose of this commentary is to explain terms that are frequently used and provide a foundation from which to consider the various perspectives put forward during the debate. An article to unpack the social context in which the law reform is being proposed will follow in another edition of the Nathaniel Report.
Some history
Cannabis has been cultivated and used in a variety of ways throughout recorded history. The Cannabis sativa plant has been a source of fibre (hemp), oil, food and linctis. It has been used as a ‘recreational’ drug in a dried plant form (commonly called marijuana), in a resin (hash or hashish), and in an oil (hash oil) form.1
Cannabis is known by other terms including: marijuana; pot, weed; dope; grass; mull; dak; hash; smoke; buds; skunk; cabbage; ganja; reefer; and Mary-Jane. Dried cannabis rolled into a cigarette to be smoked is known as a ‘joint’.
A joint of cannabis in the 1970s contained approximately 1-2% THC. In current times, a regular joint is 20-25% THC. Put another way, the average joint of the 1970s contained roughly 5 to 10 milligrams of THC, while a single joint today can contain 100 milligrams of THC
Of the several hundred chemical compounds in the cannabis plant, two are well-known: Delta-9-tetrahydrocannabinol, known as THC; and Cannabidiol, known as CBD. THC and CBD are known as ‘cannabinoids’; chemical compounds that were first isolated from the Cannabis sativa plant. THC is a psychoactive compound in cannabis. A substance is said to be psychoactive if it affects a person in a way that changes perception, mood, consciousness, cognition or actions. CBD is non-psychoactive. The potency of cannabis and its ability to produce a ‘high’ depends on the concentration of THC.
Historically, plants grown for ‘recreational’ purposes have been selected for their higher THC content. However, the levels of THC present in cannabis have increased significantly over recent decades. A joint of cannabis in the 1970s contained approximately 1-2% THC. In current times, a regular joint is 20-25% THC. Put another way, the average joint of the 1970s contained roughly 5 to 10 milligrams of THC, while a single joint today can contain 100 milligrams of THC.2 The concentration of THC is higher in resin than in the dried plant, and higher still in hash oil.
Hemp is very low in THC, containing less than 0.3% (measured in the dried flowering tops), and is nonpsychoactive. Hemp is also a cultivar of Cannabis sativa. Hemp was known and used by people across the middle latitudes of Europe and Asia from 5,000 BC,3 and has long been used as a fibre for industrial purposes. In Egypt it was used as rope when building the pyramids, and it formed the fabric on which the Guttenberg Bible and the Magna Carta were printed. Hemp is currently grown in NZ under permit for fibre, hemp/hemp seed oil, and hemp seed food products.4 Hemp is very low in THC, containing less than 0.3% (measured in the dried flowering tops), and is nonpsychoactive.
Some science
In 1964, Israeli organic chemists Raphael Mechoulam, Yehiel Gaoni and their team, isolated the structure of THC. Identifying the CBD molecule followed shortly afterward. It was discovered that THC and CBD had the ability to bind molecularly with certain receptors distributed throughout the body. The two types of cannabinoid receptors identified to date are known as CB1 (cannabinoid 1) and CB2 (cannabinoid 2).
Scientists wondered why there were specific receptors within our bodies for this type of molecule. If our bodies have the receptors, perhaps we produce these molecules ourselves – and indeed we do. In 1992, Mechoulam and his team identified a molecule that is secreted naturally within the human body: Anandamide.
Anandamide was the first endocannabinoid identified. Endo meaning ‘within’ and cannabinoid because it was received by the same system of receptors as the cannabinoid THC from the cannabis plant. Another endogenous (naturally and spontaneously occurring) cannabinoid in our bodies, 2-arachidonylglycerol (2 AG) was identified in 1993. 2AG exerts similar effects to Cannabidiol (CBD).
The identification of cannabinoid receptors and endocannabinoid molecules triggered an exponential growth of scientific studies, which led to the identification of a wider system of intercellular communication within our bodies, known as the Endocannabinoid System (ECS). The endocannabinoid system is distributed throughout the body, including the brain, central nervous system, the immune system, the gastro-intestinal tract, bone and skin. Maintaining the complex balance – the homeostasis – between the different functions of the body, the ECS regulates our body temperature and the pH level within our body. The ECS controls motor co-ordination, is involved in pain control, sleep cycles, appetite, working memory, fertility and pregnancy.
The ECS does not develop through exposure to cannabis; it exists throughout our lives and is involved in our pre- and post- natal development. The ECS is vital in brain development including synaptogenesis – the formation of the synapses in the neurons of the brain and central nervous system. It also plays a significant part in synaptic pruning, which occurs at two foundational times in our life: early childhood and adolescence.
New Zealanders are among the highest users of illegal drugs in the world, and according to the United Nations 2012 Drug Report,7 top the list for cannabis use.
Identification of the Endocannabinoid System helps explain how cannabis affects systems in the human body, but cannabis is not why the Endocannabinoid System exists. It is now known that all vertebrates and invertebrates including the humble sea-squirt that evolved over 600 million years ago, have an endocannabinoid system.5
The word ‘cannabinoids’ now refers to every chemical substance – regardless of its origin or structure – that unites with cannabinoid receptors in the ECS, and has similar effects to those produced by the plant Cannabis Sativa L.6 Cannabinoids are differentiated by their source. Those that are plant based are termed Phytocannabinoids. Compounds developed in the laboratory are termed Synthetic cannabinoids. There is still a great deal to be learned and understood about the ECS and how it is affected by endocannabinoids, phytocannabinoids and synthetic cannabinoids.
Current legal situation of cannabis
Cannabis is the most widely used illegal drug in New Zealand and the fourth most widely used recreational drug after caffeine, alcohol and tobacco. New Zealanders are among the highest users of illegal drugs in the world, and according to the United Nations 2012 Drug Report,7 top the list for cannabis use. Statistics for Oceania (predominantly Australia and New Zealand) show cannabis use between 9.1 and 14.6 per cent of people, compared with 2.8 to 4.5 per cent globally.8 The longitudinal Christchurch Study reports that in their cohort of over 1000 people born in 1977 in Christchurch, 80% have tried cannabis at least once.9
Cannabis use in New Zealand is governed by the Misuse of Drugs Act 1975. The Misuse of Drugs Act 1975 and subsequent amendments classify a wide range of controlled and illegal drugs according to the level of risk of harm they pose to people who misuse them. Cannabis oil and hashish are classified as Class B drugs and are deemed to pose a “high risk of harm”. Cannabis seed and cannabis plant are classified as Class C drugs, deemed “moderate risk of harm”. Under this Act, unauthorised possession of any amount of cannabis for any purpose is illegal.
The Misuse of Drugs (Medicinal Cannabis) Amendment Bill10 was passed into law on December 11th 2018. With the passing of this Bill, cannabis can now be used by patients who are terminally ill or in palliation – that is, patients who are seriously ill, where the focus of treatment is on improving their quality of life. In addition, the Misuse of Drugs (Medicinal Cannabis)
Amendment Bill now makes non-psychoactive cannabis-derived products available as they are no longer classified as controlled drugs.11 The law fully decriminalises cannabidiol (CBD) products and allows medicinal cannabis products to be manufactured in New Zealand. Under this new legislation it is the Governor- General who establishes regulatory standards for cannabis products. Medicinal cannabis products are not subsidised and come at a significant cost to a patient when prescribed.12
It will take until the end of 2019 for the new regulations established by the Misuse of Drugs (Medicinal Cannabis) Amendment Bill 2018 to be rolled out. Meanwhile, a statutory defence for terminally ill and palliation patients to possess and use cannabis took effect immediately.
Half of all New Zealanders with a drug dependence issue were already dependent by the time they were 19 years old, indicating that serious drug use starts early.
It is generally accepted that the usage rate of ‘recreational’ cannabis in New Zealand is high. Accordingly, the possession of cannabis in small quantities may often not be prosecuted. Instead, in some cases, first offences may result in a formal warning and confiscation by police. Such depenalisation approximates decriminalisation. Decriminalisation would involve removing the criminal penalties for possession, whilst having a sliding scale in terms of personal limits, potential civil penalties, and health referrals.
Some effects of cannabis use
Half of all New Zealanders with a drug dependence issue were already dependent by the time they were 19 years old, indicating that serious drug use starts early.13 A recent survey shows that the most common age of first drug use in New Zealand is between 15 and 17 years of age but more startling is the fact that almost one in five drug users were 14 years or younger when they first tried drugs.14 Two longitudinal studies carried out in New Zealand, where study participants have been examined from birth onwards, have produced internationally recognised data on cannabis use.
The Dunedin Multidisciplinary Health and Development Study15 is following 1,037 Dunedin individuals since their birth in 1972/1973. Regular users of cannabis within this cohort have shown impairment of everyday cognitive function, and a greater decline in IQ and memory loss compared with other participants. Impairment is concentrated among adolescent-onset cannabis users, with more persistent use associated with greater decline. Another project in this study has shown a significant increased risk of schizophrenia in later life for teenagers who use cannabis, especially for a vulnerable minority of teenagers with a predisposition to developing schizophrenia.16 Quitting or reducing cannabis use did not fully restore brain functioning among adolescent-onset cannabis users.17 The researchers suggest that cannabis has a neurotoxic effect in the adolescent developing brain, causing damage to the central and/or peripheral nervous system.
Greater understanding of the endocannabinoid system and research on endocannabinoids and how they interact, is required. We need to know more about phytocannabinoids – the myriad of cannabinoids including THC and CBD that are plant based – including their properties, their possible therapeutic applications and their long-term safety of use.
The Christchurch Health and Development study18 is following the health, education and life progress of a group of 1,265 people born in the urban region of Christchurch during mid-1977. Eighty percent of the study cohort have tried cannabis at least once, although only a small number use regularly or heavily.19 One research paper from this study looked specifically at the young people between the ages of 15 – 25yrs.20 The study concluded that regular or heavy cannabis use was associated with harms to the user including: an increase in amotivational syndrome (educational failure, employment problems, welfare dependence); the precursor to use of other illicit drugs; and the increased risk of developing psychotic symptoms. Adolescent onset and heavier users were deemed most at risk.
Considerations
The conversation around cannabis law reform is scientifically, legally and socially complex. Scientifically, there is still a good deal to learn and understand about the potential harms and benefits of cannabis-based products. Greater understanding of the endocannabinoid system and research on endocannabinoids and how they interact, is required. We need to know more about phytocannabinoids – the myriad of cannabinoids including THC and CBD that are plant based – including their properties, their possible therapeutic applications and their long-term safety of use. Research in these areas is currently being undertaken, and academically, the field of cannabinoid research generates some 10 000 articles per annum globally.21
It is important that people thoughtfully engage with the different facets of the cannabis law reform debate in order to take an informed stance in the referendum. Our next article will raise some issues around the social complexity of cannabis law reform.
Dr Deborah Stevens and Dr Lynne Bowyer are the co-directors of the New Zealand Centre for Science and Citizenship (www. nzcsc.org), a charitable trust that promotes informed public engagement on a range of ethical issues.
Endnotes
1 https://www.drugfoundation.org.nz/info/drug-index/cannabis/ 2 Berenson, A. (2019). Tell your children the truth about marijuana, mental illness and violence. New York: Free Press, p.40-41 3 Barber, Elizabeth Wayland. (1992). Prehistoric Textiles: The Development of Cloth in the Neolithic and Bronze Ages with Special Reference to the Aegean. Princeton University Press. p. 36. 4 NZ Govt Press Release: Hemp seed can now be sold as food. Nov 6 2018. http://www.scoop.co.nz/stories/BU1811/S00149/hemp-seed-can-nowbe- sold-as-food.htm 5 https://medium.com/randy-s-club/7-things-you-probably-didnt-knowabout-the-endocannabinoid-system-35e264c802bc 6 https://www.fundacion-canna.es/en/cannabinoids 7 Kiwis World’s Top Cannabis Smokers. NZ Herald June 2012 https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10815874 8 United Nations Office on Drugs and Crime - World Drug Report 2012 http://www.unodc.org/unodc/en/data-and-analysis/WDR-2012.html 9 Boden J. Cannabis – what’s the harm? Christchurch Health and Development Study https://vimeo.com/272146311 10 Misuse of Drugs (Medicinal Cannabis) Amendment Bill http://www.legislation.govt.nz/bill/government/2017/0012/latest/DLM7518707.html 11 Misuse of Drugs (Medicinal Cannabis) Amendment Act, Dec 2018, NZ Ministry of Health. https://www.health.govt.nz/our-work/regulationhealth-and-disability-system/medicines-control/medicinal-cannabis/misuse-drugs-medicinal-cannabis-amendment-act 12 Personal correspondence from a South Island based General Practitioner. 13 New Zealand Drug Foundation (2017) https://www.drugfoundation.org.nz/matters-of-substance/october-2017/the-right-message/ 14 http://riskgroup.co.nz/Drug_Dogs/Schools.html 15 The Dunedin Multidisciplinary Health and Development Study. https://dunedinstudy.otago.ac.nz/ 16 Cannabis use ‘trigger for schizophrenia’. New Zealand Herald 20 Feb 2019. https://www.nzherald.co.nz/technology/news/article.cfm?c_id=5&objectid=10116853 17 Meier et al 2012, PNAS 109 (40) Persistent cannabis users show neuropsychological decline from childhood to midlife. https://www.scribd.com/document/280247224/Meier-2012-PNAS-Persistent-Cannabis-Use 18 The Christchurch Health and Development study https://www.otago.ac.nz/christchurch/research/healthdevelopment/ 19 Boden J. Cannabis: what you need to know 2018 https://www.otago.ac.nz/otagomagazine/issue47/opinion/otago696401.html 20 Fergusson, David; Joseph M. Boden; L. John Horwood (April 2006). “Cannabis use and other illicit drug use: Testing the cannabis gateway hypothesis”. Addiction. 101 (4): 556–569. doi:10.1111/j.1360-0443.2005.01322.x. PMID 16548935 21 Bab, I. (2011). British Journal of Pharmacology August 163(7), 1327-1328. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165944/
New Zealand Catholic Bishops Conference submission to the Royal Commission on Genetic Modification (2001)
Submission to the National Ethics Committee on Assisted Human Reproduction (NECAHR) on the Draft Guidelines for Non-commercial Altruistic Surrogacy Using IVF as Treatment (2001)
Submission to Health Select Committee on Human Assisted Reproductive Technology Bill (2003)
Human Assisted Reproductive Technology Bill
Submission on behalf of the New Zealand Catholic Bishops Conference and The Nathaniel Centre – The New Zealand Catholic Bioethics Centre
Introduction
We welcome this opportunity to present a joint submission on The Supplementary Order Paper – Human Assisted Reproductive Technology Bill 2003. The New Zealand Catholic Bishops Conference speaks on behalf of the Catholic Church in New Zealand. The Nathaniel Centre – The New Zealand Catholic Bioethics Centre is an agency of the Bishops Conference. Its role is to address bioethical and biotechnology issues on behalf of the Catholic Church in New Zealand.
1. Developments in the field of reproductive technologies, and the opportunities derived from them, raise deep and important questions about the beginning of life.
2. From the moment of fertilisation an embryo "is already the human being it will always be and will only grow in size and complexity." In other words, there is no threshold that embryos cross to become human – there is rather a continuity to human existence. This belief lies at the heart of Catholic attitudes and responses to the use of artificial human reproductive technologies.
3. In acknowledging that a new human life begins at fertilisation we are also committing ourselves to providing for that unique individual the same safeguards and rights which furnish a necessary shelter within which we can develop our full human potential.
4. The Catholic Church believes that the use of assisted reproductive technology is only acceptable between a husband and a wife in very specific circumstances which assist the natural processes of reproduction and do not pose undue risks for parent or child. Meeting the needs of couples who are infertile is by itself not sufficient as a criterion for evaluating the use of particular technologies.
5. Technology is morally neutral. We recognise and welcome the remarkable advances in science and technology that contribute to improving the welfare of humanity and the world in which we live. Failure to embrace such developments, both now and in the future, would represent a moral failure in terms of our responsibility and stewardship for current society and for generations to come. At the same time, many of the developments have the potential for adverse effects - for society as a whole, as well as for individuals and certain groups of individuals.
6. A proper assessment of the uses of reproductive technology goes beyond "physical" risks and includes a consideration of the ethical, cultural, social and spiritual dimensions of our human nature.
7. We are particularly concerned about a trend within New Zealand to focus ethical debate only on the question of whether free and informed consent has been given. An over emphasis on the importance of consent, together with an over emphasis on the rights of adults, can mean that deeper ethical considerations are left unaddressed.
8. Our society is characterised by religious and moral pluralism. In order to bring together the various voices in the debate on human reproduction, a framework is required that offers stable reference points that can be accepted by all, independent of any particular faith or religious perspective.
We make the following specific points in relation to the proposed amendments to the Human Assisted Reproductive Technology Bill:
Part 1AA
Preliminary Provisions
Section 3; Purposes
9. We believe that, in addition to the purposes listed, it should be a stated intention of the HART Bill to establish the mechanisms for ensuring that appropriate public discussion and consultation are held with respect to guidelines relating to new issues.
Section 4; Principles
10. We commend the use of principles in the Supplementary Order Paper (SOP) as helping to establish an essential framework for decision making in the area of human assisted reproductive technologies. We make the following observations concerning the SOP principles.
11. 4(b) "Human health, safety, and dignity ..." Human health and safety are an expression of the innate dignity of the human person. We wish to see human dignity set down as a principle in its own right. [See paragraph below.]
4(c) " ... to make an informed choice to submit or to refuse to submit to the procedure or the research ..." The use of the word "submit" suggests coercion and paternalism. This is unhelpful.
4(d) "Donor offspring should be made aware of the genetic origins ..." Knowledge of genetic origins is an entitlement and not an option. We support the intent of the proposed legislation for clear records to be kept.
12. We see that the principles set out in the SOP are incomplete, and recommend they be supplemented by the following general principles. Many people, regardless of religious perspective, commonly accept these principles . They are:
a) Respect for the Intrinsic Dignity of Human Life.
By the term "intrinsic" we mean rights that exist quite apart from, and unrelated to, the circumstances of an individual's conception and birth or their ability to function.
b) Promotion of Human Health and Safety.
This principle is very often described in terms of the bioethical principles of beneficence and nonmaleficence. Beneficence highlights the positive obligation we have to advance the healthcare interests and welfare of others. The principle of nonmaleficence imposes the obligation not to harm a person or persons intentionally or directly.
[These two principles a) and b) would replace principle 4 b) of the SOP.]
c) Protection of the Vulnerable.
This calls for a recognition of those whose rights may be infringed or who may be exploited, especially those who cannot defend or speak for themselves.
d) Balancing of Individual and Collective Interests.
The notion that the common good of society will place restrictions on the pursuit of individual choices is a general principle that applies to the area of human reproduction as much as to other areas of society. This involves consideration of, and due respect for, the ethical, spiritual and cultural perspectives of Maori as well as all other groups.
e) The Non-commercialisation of Human Reproduction.
The starting point for Catholic-Christian discussions about human reproduction is the traditional, hallowed, philosophical and religious understanding of life as a sacred gift; ultimately a gift from God but also a testimony of the generous giving of spouses. The metaphor of life as "gift" proscribes any commercialisation of human reproduction.
f) Acceptance of Human and Material Limits.
This principle highlights the challenge of balancing access to services with responsible stewardship of goods and services.
13. Taken together with those set out in the SOP, we believe that these principles form a framework that will ensure the dignity and well being of human life are upheld, and the rights of individuals and the common good of society are balanced in a just and equitable way.
14. We note and strongly support the principle that all persons exercising powers or performing functions under the Act should hold the health and well-being of children born as a result of the performance of an assisted reproductive procedure to be paramount in all decisions.
15. The test of commitment to these principles is whether they can be translated into effective procedures, guaranteed under the Act, that ensure the ethical, spiritual, and cultural dimensions will be properly considered and respected. We see this as occurring, among other ways, through widespread and ongoing public consultation on key issues.
Part 1
Prohibited and regulated Activities
Subpart 1 – Prohibited actions
Section 7; Prohibited actions
16. With respect to Schedule 1, we support all of the prohibitions set out in the SOP.
i. Human cloning for reproductive purposes (producing children genetically identical to the cell donor).
ii. Creation of Human/non-human hybrid embryos for reproductive purposes
iii. The implantation of animal and hybrid embryos or foetuses into humans
iv. The implantation of human and hybrid embryos or foetuses into animals
17. We note with extreme concern that the proposed legislation would allow research on so-called "spare" embryos from IVF procedures and that it would also allow the creation of embryos for purposes of research (either by way of IVF or by way of "therapeutic cloning"). This is inconsistent with the principle of preserving and promoting human dignity as stated in section 4(b) of the SOP.
18. We strongly contend that germline genetic alteration needs to be included as a prohibited activity. The best opinions on this matter point to the fact that germ-line genetic alteration is both unsafe and impractical at this time, as well as having unknown consequences for subsequent generations. We acknowledge that the intention of germ-line genetic alteration is to affect patterns of genetically based diseases. However, we believe that the burden of proof regarding safety of such practices needs to remain with those who would advocate the use of such practices. We believe that such practices need to remain prohibited for the foreseeable future, that is, prohibited through legislation rather than being left at the discretion of any advisory body.
19. Consequently, to the list of prohibitions, we would want the following practices added:
a) Research on embryos left over from IVF programmes
b) Creation of an embryo solely for purposes of research
c) "Therapeutic cloning", i.e. embryo cloning for non-reproductive purposes (currently a matter for MAC to advise on)
d) Embryo splitting
e) Creation and use of hybrid embryos for non-reproductive purposes
f) The use of gametes derived from foetuses
g) Germline genetic alteration
Section 10; Duty to stop development of embryos outside human body after 14 days
20. Without condoning the practice of IVF, we wish to limit the harm caused by the creation of embryos that will never be implanted. Whatever the circumstances of its genesis all embryos are to be treated with absolute dignity and respect. Commitment to the intrinsic dignity of the embryo proscribes all activities on embryos already formed via IVF, other than for the purpose of implantation within the womb of its mother. The 14-day period is unnecessarily long for the purposes of fertility treatment and appears to be concerned with making provision for research and experimentation on embryos. As stated previously, this should be prohibited.
Section 11; Commercial supply of embryos or human gametes
21. The purchase, barter or exchange of human gametes and embryos is contrary to the principle of intrinsic human dignity. We support the prohibition of, and the proposed penalties for, the giving or receiving of valuable consideration for the supply of an embryo or human gametes.
Section 12; Status of surrogacy arrangements and prohibition of commercial surrogacy arrangements
22. We wish to state our opposition to all forms of surrogacy. We believe that the overall well-being of children is compromised when they become subject to any arrangements under which a woman agrees to become pregnant for the purpose of surrendering custody of a child to be born. We also believe that the practice of surrogacy can place the health and welfare of women at risk. We support the move that would seek to keep surrogacy arrangements from being made enforceable.
23. Within assisted human reproductive technologies there is a significant risk of the commodification of children and the reproductive capacities of women and men. The exploitation of children, women and men for commercial ends is an affront to the intrinsic dignity of persons, and therefore we welcome the prohibition of commercial surrogacy. In addition, the commercialisation of such activities is contrary to the well-established and accepted New Zealand practice whereby human organs and tissues are not sold or purchased and adoption is non-commercial.
Subpart 2 – Activities requiring approval of ethics committees
Section 14; Assisted reproductive procedures and human reproductive research only to proceed with prior approval
24. An over emphasis on the sufficiency of individual informed consent, as has been exemplified by a number of commentators with respect to recent debates in the bioethical area, reflects a failure to acknowledge the wider impact of technological interventions. This, in turn, often reflects a view of the human person that fails to properly acknowledge our inter-connectedness and the impact of our individual decisions on others. It is vital that as a society we take into account the effect of reproductive technologies on core societal values and the common good, including their potential to redefine certain fundamental under-standings around parenting and children.
25. One of the less talked about implications of the use of assisted reproductive procedures is their potential to redefine our fundamental understandings of parenthood, children and our acceptance of human diversity. Consequently, decisions around the use of reproductive technologies are too important to be left entirely in the hands of individuals or couples without broader societal oversight and accountability. The proposed requirement that assisted reproductive procedures and human reproductive research must gain the approval of an appropriate ethics committee, reflects the implications which these issues have for the community as a whole, and of the need for limits. We strongly reject the view that the involvement of ethics committees in people's decisions to use assisted reproductive procedures represents an intrusion into the lives of adults.
Section 24: Designation of Ethics Committees
26. To meet international guidelines for research and practice, it is imperative that ethics committees must be "independent" of any undue political interference. The proposed legislation gives too much power to the Minister to appoint, designate, and terminate.
Subpart 3 – Advisory committee
Section 31; Advisory committee to be established
27. We support the establishment of an advisory committee. To avoid it being a minimal response in the implementation of reproductive technologies, this committee needs to be well resourced in order to carry out what is needed in the timeframe that the technology will force upon it.
Section 33; Appointment of members
28. In line with the principle of considering and respecting the different ethical, spiritual and cultural perspectives, we consider subsection (4) to be deficient in as much as it does not make direct provision for one or more members with expertise of a "spiritual" nature. Broad-based representation on the Ministerial Advisory Committee is essential and should include people with cultural and spiritual and ethical backgrounds. In its current form we do not believe that the legislation will achieve its stated aim of considering and respecting the different ethical, spiritual, and cultural perspectives in society.
29. With regard to the makeup of the Ministerial Advisory Committee we recognise the need for specialised knowledge in assisted reproductive procedures and human reproductive research. Nevertheless, there is the potential in the committee makeup for provider and researcher capture. The makeup of the committee must avoid any conflict of interest. We note that the National Ethics Committee on Assisted Human Reproduction (NECAHR) have made provision to appoint a specialist to advise, when necessary, on technical matters relating to assisted reproductive technology. This person does not take part in any decision making.
30. The fast developing nature of the technology and its potential to redefine fundamental understandings of parenthood and children calls for an advisory body that:
a) Is independent of any organisation or group of individuals that stand to benefit financially or in any other way from reproductive procedures/treatments or research.
b) Is broad-based in its make-up and includes representatives from the churches.
c) Is willing to balance the scientific imperative that holds that research must always proceed as quickly as possible.
d) Sufficiently recognises and takes into proper account the fact that risks and harms associated with assisted reproductive technologies apply as much to the "human spirit" (our ethical, cultural, social and spiritual dimensions) as to our physical well-being.
e) Will be subject to transparent accountability mechanisms.
Section 36; Advisory committee to provide specific advice
31. We wish to point out that there is an ethically relevant distinction between embryo donation to infertile couples and the donation of "spare" embryos for purposes of research. The proposed legislation, in its current form, does not make this differentiation. These two quite different types of activities need to be clearly differentiated within the act itself.
32. Embryo selection is unacceptable because it implicitly and explicitly devalues life that is already weak and marginalised. Allowing embryo selection for any reasons, including those related to the health of the child to be born may actually open the way to significant pressure for eugenic or discriminatory activity. Persons with disabilities are a particularly vulnerable group who need protection. We note that very often their vulnerability derives from socially constructed perceptions of "normality" which rest on a shallow understanding of humanity. Persons with disabilities can lead full and satisfying lives and enrich the lives of those around them.
Section 37; Requirement to consult
33. We are extremely concerned that there is no obligation by the advisory committee to consult with the wider public, other than when it sees fit to consult, and only then with whom it sees fit to consult. This is inconsistent with what is happening in the environmental area. Given that the committee is charged with providing specific advice and issuing guidelines on matters relating to any kind of assisted reproductive procedures and human reproductive research, we believe that wide public debate and input is essential. The need for wide public consultation on issues in which the whole community has a stake must be an integral part of the legislation. It is unacceptable that the need to consult be left to the discretion of the advisory committee or the Minister.
Part 4
Information about donors of donated cells and donor offspring
34. The principle that we have a right to know our lineage or genetic heritage, and the requirement that the health and well-being of children be paramount, requires that legislation provide for the sharing of information between all those involved in any form of assisted reproduction. Where there is a conflict between the privacy rights of a donor and the rights of a resulting child to know its heritage, the rights of the child should prevail.
35. As a result of assisted reproductive technologies, a child may have as many as five "parents". Without condoning the practice, we believe that it is the right of children who are born by way of assisted reproductive procedures involving donor gametes to have access to full information about their origins. We note that the proposed legislation does not require donor offspring to be told about the circumstances of their conception, and accepts that the child's family may - or may not - share information at any stage. This right should not be at the discretion of parents. Research into the effects of adoption on children has taught us the negative effects of a system that is less than totally open from a child's earliest years on. In its current form this part of the SOP clearly falls short of the stated aim to uphold as paramount the principle that actions be guided by what is best for the child.
Section 38
Advisory committee to consider desirability of activities
36. The desirability of research, or its intended outcome, is not a sufficient determinant of what is ethical. This principle, often expressed in terms of the maxim 'the end does not justify the means', has been consistently upheld in our society. Lack of regard for this maxim has resulted in well documented abuse of human rights. We believe that the notion that research must proceed as quickly as possible must be challenged because such research may reflect values that are not balanced by ethical, cultural and spiritual concerns.
Submission to the Education and Science Select Committee on the New Organisms and Other Matters Bill (2003)
Issue 10, August 2003