Current Medico-legal IssuesAttorney-General
ADDRESS TO 7TH ANNUAL NEW ZEALAND MEDICO-LEGAL CONFERENCE
I am pleased to be here today to address you on the topic of "current medico-legal issues". Some of the most challenging medico-legal issues we will face in coming years result from advances in technology and scientific knowledge. I'd like to take this opportunity to discuss 3 issues that well illustrate this reality.
The first such area where technology raises challenging ethical and legal issues is assisted human reproduction. There are currently two bills before the Health Select Committee dealing with this area. One, the Assisted Human Reproduction Bill, is a Government bill. The other, the Human Assisted Reproductive Technology Bill, is a Member's Bill introduced into Parliament by the Labour list member Dianne Yates. These bills adopt vastly different approaches to the issues. I hope that the select committee's consideration of these bills will result in informed public debate of the issues and legislation that places New Zealand well to deal with the future of assisted human reproduction.
I thought I would talk today about some of the issues raised in this area and the kinds of policy and legislative responses that these issues call for.
In 1993 a two person Ministerial Committee on Assisted Reproductive Technologies (known as "MCART") was established. MCART was given the task of gathering information on assisted human reproduction, both in relation to New Zealand and on overseas developments. The Committee was required to report on options for responding to the issues raised by assisted human reproduction in New Zealand.
MCART reviewed the issues against a background of extensive consultation and research. In July 1994 it produced its report Assisted Human Reproduction - Navigating Our Future.
MCART's report emphasised some important themes in the area of assisted human reproduction:
MCART stressed that the system for regulating assisted human reproduction must be one in which the public can have confidence. Any such system needs to be flexible and adaptable to deal with changing needs and attitudes.
MCART found that accredited providers of reproductive services have been acting in a responsible manner. Accordingly, it concluded that the existing mechanisms for professional regulation and ethical approval should be retained, subject to some fine-tuning.
One of the guiding principles adopted by MCART was the right to know genetic origins. MCART recommended that the right to know genetic origins should dictate a policy of openness with respect to donated gametes and embryos.
MCART recommended against criminal offences in relation to surrogacy. Rather, it suggested that appropriate record-keeping, freedom to continue cultural practices such as whangai, and the right to know genetic origins must influence policy relating to surrogacy.
MCART recommended that certain fundamentally unethical procedures should be prohibited, although it did not favour prescriptive legislation.
After receiving MCART's report, the Government directed an officials' committee to consider the recommendations made by MCART. The officials' committee released a public consultation document and received a number of submissions. These submissions were taken into account in the formulation of advice to Government.
The Government's decisions culminated in the Assisted Human Reproduction Bill which is currently before the Health Select Committee. The bill is intended to provide a flexible and responsive approach to the constant advances in technology and shifting social attitudes that may be expected.
The bill prohibits certain fundamentally unethical activities. In particular, the cloning of human beings, animal-human hybrids, the implantation of animal or human embryos into the opposite species, and research into these activities using human cells are all to be prohibited. The sale of gametes and embryos is also to be prohibited on the same basis as the prohibition on the sale of human blood which is contained in the Health Act.
This list of prohibited activities represents the outer limits of ethical acceptability. These activities are fundamentally unethical and are unlikely to ever receive ethical approval. It is not intended that this list be exhaustive. There are numerous difficulties involved in trying to produce an exhaustive list of prohibited activities. For instance, shifting social attitudes may result in some activities which are currently unacceptable gaining acceptance over time. Furthermore, there are difficulties in attempting to define for all time an exhaustive list of unethical activities in an area of rapid technological advances. Accordingly, the Government has taken the view that other activities will be dealt with through the ethical decision making structures that the Bill puts in place.
The National Ethics Committee on Assisted Human Reproduction is to be put on a statutory basis. The committee is currently established by the Minister of Health under the Health and Disability Services Act. However, because of its central importance in dealing with the emerging issues in the area of assisted human reproduction, the Government took the view that it should be firmly anchored in the new legislation.
The Bill provides for the appointment and functions of the ethics committee. In accordance with the National Standard for Ethics Committees, at least half of the members and the Chairperson of the Committee must be lay persons.
The ethics committee's key function under the new legislation will be to review proposals to determine whether they are ethical. In particular, the committee must consider whether the rights of individuals involved in the proposal will be protected. It must also take account of the ethical perspectives of Maori, and other cultural, ethnic, religious, and social groups in New Zealand.
The bill also imposes some procedural requirements on the ethics committee. In particular, where the committee is considering a proposal that is new to New Zealand, it must refer that proposal to the Minister of Health. The ethics committee may not make a decision on such a proposal until either the Minister of Health has conveyed the Government's views on the proposal, or two months have passed since the proposal was referred to the Minister.
If the committee approves a proposal contrary to the views of the Government, then that approval does not take effect for six months. This six month period is intended to give the Government time in which to legislate on the issue under consideration.
MCART stressed that New Zealand should develop policies on assisted human reproduction that suit our conditions. While we can be guided and informed by what is happening elsewhere, at the end of the day our solutions need to be our own. One of the key advantages of the ethics committee remaining the central mechanism for ethical decision making rather than the legislature attempting to prescribe an exhaustive list of prohibited activities, is the degree of inherent flexibility. The Government's bill anticipates that decisions will be made on the basis of what is best for the individuals concerned, and with consideration for New Zealand's unique social and cultural conditions.
The Government bill also provides for an information scheme for donors and children born as a result of donated gametes.
In recommending a policy of openness about genetic origins, MCART noted that there is genuine concern that an openness policy will affect the availability of donated gametes. Given New Zealand's history with closed adoption and the importance of whakapapa in Maori culture, it can be argued that the right to know one's genetic origins outweighs this concern. Certainly, MCART reported that the weight of submissions to it favoured a policy of openness.
Furthermore, both donors and people receiving treatment using donated gametes will be made aware at the beginning of the process that certain information, including the identity of the donor, will be collected and made available to any child born as a result of donated gametes. Therefore, it can be said that any subsequent involvement in donating gametes or receiving treatment is on the basis of informed consent.
Providers of assisted human reproductive services will collect information about donors and children. They will be required to keep this information for at least 50 years.
Providers will also be required to forward certain information about donors and children to the Registrar-General of Births, Deaths and Marriages where it will be kept indefinitely.
Children will be able to have access to identifying information about the donor from the age of 18. The donor may have access to identifying information about the child when the child turns 18 if the child consents, or otherwise, after the child has turned 25. There are no age limits on access to non-identifying information.
The Privacy Commissioner will have jurisdiction to deal with complaints under the information scheme relating to such matters as wrongful disclosure or denial of access.
Also likely to come under scrutiny during the select committee consideration of both of the bills are policy issues which the Government bill does not directly address.
In particular, surrogacy is likely to be the subject of considerable interest. The Government has decided not to impose any offences in relation to surrogacy. MCART recommended that no rules should be developed which impinge on ordinary sexual relations or cultural practices such as whangai. It was also concerned with the possibility of regulation jeopardising a child's right to information about genetic origins. MCART considered that policy in this area should encourage openness.
There is a danger that, if criminal offences are imposed, surrogacy practices might be driven underground. This would make it more difficult for those determined to enter surrogacy arrangements to obtain appropriate advice and assistance such as counselling, legal advice, and medical assistance. There is also a danger that children resulting from arrangements conducted in secret would be denied knowledge of their genetic origins. The Government has therefore decided that offences relating to surrogacy are inappropriate at this time. Surrogacy will continue to be monitored.
Another area not covered by the Government's bill is that of storage of gametes and embryos. It is common in overseas jurisdictions for statutory time limits to be imposed on the storage of gametes and embryos. MCART took the view that all human tissue, including embryos and gametes should be regarded as tapu and sacred. It considered that the integrity and dignity of those involved requires that the primary decision-makers with respect to gametes and embryos should be the gamete providers. Such an approach allows individuals to bring their own moral and cultural viewpoints to bear.
The Reproductive Technology Accreditation Committee, with which all New Zealand providers are accredited, has issued guidelines which deal with the storage of gametes and embryos. These guidelines require that, as a precondition to treatment, people must state a maximum period of storage and what is to happen to their gametes and embryos if they die or become incapable of revoking or varying their consent.
The Government has invited the Royal New Zealand College of Obstetricians and Gynaecologists to consider whether two further issues ought to be addressed. The first question is what should happen in the event of a dispute over the future of an embryo between the gamete donors. Secondly, there is a question as to whether there should be an overall limit on the maximum possible storage period that may be set by donors.
The Government has also decided that a statutory licensing regime for the regulation of assisted human reproductive services is both unnecessary and undesirable. Such regimes are common in overseas jurisdictions. MCART recommended against such a regime. New Zealand, afterall, has only a small number of service providers and a licensing regime would be costly to the taxpayer, providers, and consumers. A statutory licensing regime would duplicate the current system of statutory provisions and professional self-regulation which MCART found to be working well.
Given that the current system of regulation is both satisfactory and cost-effective, the Government decided against the imposition of statutory licensing. Instead, the Royal New Zealand College of Obstetricians and Gynaecologists has been invited to prepare a New Zealand supplement to the Reproductive Technology Accreditation Committee's guidelines. This supplement will address any issues specific to New Zealand and not already covered in the guidelines.
The Human Assisted Reproductive Technology Bill introduced to Parliament by the Labour list Member Dianne Yates is also to be considered by the select committee. This bill takes quite a different approach to the Government bill. In particular, it is more prescriptive in terms of prohibited activities, introduces a statutory licensing regime, and attempts to prohibit commercial surrogacy.
It is hoped that the consideration of both of these bills together will promote informed debate of the issues and allow for all points of view to be brought forward. The issues afterall are important ones that raise fundamental questions about human dignity. The range of viewpoints amongst the community is likely to be broad. The possibilities for future development of the technology are endless and unknown.
But what is clear is that New Zealand needs to develop its own solutions to these difficult social, moral and ethical issues which take into account our unique cultural and social conditions. Overseas experience has shown that rigid and overly prescriptive legislation creates anomalies rather than solving the complex problems faced in this area. The Government's bill is intended to provide a flexible and responsive approach to the constant advances in technology and shifting social attitudes that may be expected.
The approach we are taking with assisted human reproduction may well inform New Zealand's treatment of other such medico-legal issues that are likely to arise as a result of leaps in technology and scientific knowledge.
For instance, the so-called "genetic revolution" is another area where rapid advances in technology have raised major moral, ethical and legal questions. There are many benefits to be gained from this new technology - such as the ability to identify and possibly cure disorders. However, there are difficult questions that go along with this, as well as the potential for abuse. The detection of certain genetic traits brings with it the possibility of discrimination. The ability to identify these genetic traits raises complex questions such as who should have access to this information and whether an individual may chose not to know about their genetic traits. Genetic knowledge also brings with it the potential for genetic manipulation. In what circumstances would we consider this to be acceptable and when would it be unethical?
If we take the example of pre-implantation genetic diagnosis we can see some of the implications. Preimplantation genetic diagnosis is, as you will be aware, used to help people who are at risk of passing on a serious genetic disorder to their children. However, there are legitimate concerns about this technology being used to pick and choose genetic features and design ideal human beings. The possibilities, however remote they might seem, are disturbing.
Also, some advocates for disability rights have objected to the use of preimplantation genetic diagnosis because they think that it carries with it implied messages about the worth and value of disabled people. There is a concern that we will develop into a society where nothing short of physical perfection is acceptable. Another area where debate overseas has been intense is in relation to genetics and insurance. Insurance is inherently about mitigating the effects of harmful events of uncertain incidence. Complex issues arise when the uncertainty of these events occurring can be eliminated or reduced. Individuals with little or no risk of suffering harm are unlikely to purchase insurance. Conversely, insurers are unlikely to insure those with a high risk of suffering harm.
Accordingly, increased genetic knowledge brings with it questions about the extent to which insurance companies should be able to use this information in making decisions about an individual's insurance cover.
In the United States the debate has focused largely on whether legislation to prohibit the use of genetic tests by health insurers is necessary or desirable. A great deal of recent legislation in the United States aims to restrict the use of genetic information by commercial health insurers. For example, federal legislation passed in 1996 forbids insurance companies from using genetic information to exclude particular individuals from group health insurance schemes. The state of New Jersey has gone even further and has prohibited the use of genetic information for any employment or insurance purpose without written consent, and has put an absolute ban on the use of any such information to refuse health insurance coverage.
The debate in the United Kingdom to date has been rather different in nature. There the debate has focused largely on issues relating to life insurance. The Association of British Insurers has argued that insurers should be able to compel individuals to disclose the results of any genetic tests the individual has undergone. On the other side of the debate, the Human Genetics Advisory Commission, a Government advisory body, has suggested that too little is known about the actuarial implications of specific genetic tests to allow insurers to require disclosure of test results.
Any legal response to these issues, as with assisted human reproduction, will need to focus on establishing structures that are flexible. In areas where science moves quickly there is a need to be able to monitor and police whilst still accommodating advancing knowledge and changing social attitudes. Where technology raises such complex and profound issues, the solutions can only be found in considered and mature legal and ethical responses. We need also to bear in mind the benefits of such technologies and be careful not to throw out the baby with the bath-water.
Another area where complex legal and ethical issues are raised by advances in medical and scientific knowledge is in relation to the use of DNA evidence in criminal investigations and legal proceedings. As you might be aware, the Criminal Investigations (Blood Samples) Act came into force in 1996. This Act introduces a comprehensive code in relation to the taking of blood samples for the purpose of DNA testing in the investigation of crime.
The Act allows for the compulsory taking of a blood sample where a Judge is satisfied that, amongst other things, material reasonably believed to be from the body of a person who committed the offence has been found at the scene of the offence, or on the victim or on anything reasonably believed to have been worn or carried by the victim when the offence was committed, or on any person or thing reasonably believed to have been associated with the commission of the offence.
One issue that has recently arisen in relation to this legislation is whether it allows for the compulsory taking of blood for the purposes of comparison with DNA material from an aborted or miscarried foetus. In the case of R v T the Court of Appeal had occasion to consider this very issue. In that case, the investigation in question was in relation to the rape of an intellectually handicapped woman who had become pregnant and had later miscarried. The Police sought a blood sample from the accused for the purposes of comparison with DNA material from the foetus. Accordingly, the key question in the case was whether DNA material from a foetus may be said to be "material reasonably believed to be from the body of the person who committed the offence".
The Court of Appeal considered that it was strained to describe material from a foetus as being material from the body of the person who committed the offence. The foetus carried by the complainant in this case had been spontaneously aborted at between 19 and 20 weeks gestation. The Court concluded that by this stage anything that could possibly be described as original genetic material from the father was no longer present. The Court took the view that material from the body of the offender seems to cover only material once present in or on the offender.
On the face of the legislation as currently drafted, this appears to be a sensible conclusion. The legislation was, afterall, drafted with material such as hair, saliva or semen in mind. That is, material which comes directly from the body of the offender.
The possibility of taking of blood from suspected offenders for comparison with foetal material would appear to raise a number of complex issues. A key question is whether the legislation should permit only "original" genetic material from the father to be available for comparison with a blood sample from a suspected offender. Central to this is the question of when "original" genetic material from the father is lost in the gestation period.
To date, the cases considered by the Courts have involved miscarried or aborted foetuses. However, if comparison of a suspected offender's blood with foetal material were permitted, there might also be questions as to whether material from a foetus in the womb could be utilised, and if so, under what conditions. Furthermore, if material from foetuses at any stage in the gestation period may be used for DNA comparison with blood from a suspected offender, then should material from living babies also be used for this purpose?
Certainly these are difficult issues which vividly illustrate the legal and ethical conundrums arising from advances in medical and scientific knowledge. It appears reasonable for us to expect many more such issues to be raised in the future. In responding to these issues we will need to carefully balance the inherent rights and characteristics of individuals, their reasonable expectations, and the benefits and risks to society as a whole from use of new technologies.
Thank you for the opportunity to address you today. I wish you well with the rest of your conference.