Submission to Health select committee on Human Assisted Reproductive Technology Bill

NZORD's submission on the Human Assisted Reproductive Technology Bill.

In May 2003 Parliament's Health Select Committee called for submissions on this Bill, with a Supplementary Order Paper setting out the Government's position on two previous Bills on this topic. Our submission is detailed below. Key features are summarised here:

  • To prohibit unacceptable assisted reproductive procedures and unacceptable human reproductive research - The Bill would prohibit the creation of cloned or hybrid embryos for reproductive purposes.
  • To prohibit certain commercial transactions relating to human reproduction - This would still allow donations of egg and sperm, and surrogate births, but prohibit payment for these.
  • To provide a framework for regulating and guiding the performance of assisted reproductive procedures and the conduct of human reproductive research - This would be through the establishment of a Ministerial Advisory Committee on Assisted Reproductive Procedures and Human Reproductive Research, and through Regulations to determine procedures that are permitted.
  • To prohibit the performance of assisted reproductive procedures (other than established procedures) or the conduct of human reproductive research without the continuing approval of an ethics committee.
  • To establish a comprehensive information-keeping regime to ensure that people born as a result of donated cells can find out about their genetic origins.
  • Other provisions in the Bill include provisions for moratorium on certain activities while their implications are considered, and requirements for public consultation by the Advisory Committee prior to forming its advice to the Minister or its guidelines to ethics committees.

Our submission presented to the select committee on 3 September 2003:

  1. NZORD supports this Bill in its entirety, though we have greater interest in those areas of the Bill covering techniques that would be used to control the incidence of disease and disability in the population.
  2. We see the Bill as a sensible and pragmatic way of dealing with the complex social, ethical and legal factors associated with a rapidly changing area of technology.
  3. Provision for established procedures to continue without restriction, is an important protection for what we have in place now.
  4. Setting up a comprehensive system of controls for new techniques and procedures, will allow the social dimensions, ethics and regulations to keep pace with the rapidly changing technological possibilities.
  5. This enabling approach is preferable to a prescriptive law that may be rapidly surpassed by technical possibilities, and changing attitudes.
  6. We support the role of ethics committees, supervised and guided by the Ministerial Advisory Committee, with overall direction by Regulations, as the most appropriate way of managing assisted reproduction in humans.
  7. Submissions may be received by the Committee from groups expressing concern at the implications of this Bill for people with disabilities, and urging restriction on procedures intended to reduce the incidence of disability.
    • In anticipation of such comments, NZORD asks the committee to note a wide variety of experiences and views in the disability sector, with no group having a mandate to speak for all disability interests.
    • There are increasing concerns at the emphasis on the social model of disability, and the way in which this model does not acknowledge the health issues that underpin many disabilities. The social model tends to deny the need for biomedical solutions to disability.
    • There are a number of people in the disability sector who believe that the identity politics of some disabled people should prevail over the views and choices of others who would prefer to avoid disability where that is possible. Some argue from a position that sees their acceptance of disability in themselves or their children, as the sort of view that should be required of others.
    • However, in many discussions among NZORD's networks, especially among those where the disorder is more severe, degenerative or reduces life expectancy, there is invariably strong support for retaining parental choice about ethically approved technology that might reduce the severity or the incidence of the condition in their family.
    • NZORD believes it is unacceptable for the views of a minority in the disability sector to direct the views and actions of others, and restrict their choices, and we ask the committee to reject any suggested changes along those lines.
  8. Notably absent from the Supplementary Order Paper is a section from the 1996 draft Bill on this same topic, that proposed a ban on sex-selection.
    • We support the exclusion of this matter. In the absence of better technology to identify inherited diseases, sex-selection is one method whereby the incidence of severe or fatal diseases (most often X-chromosome-linked diseases in males, but sometimes more frequent in females) can be prevented from recurring in some families.
    • We note that New Zealand does not have the significant social and ethical problems associated with sex-selection experienced in parts of Asia, and we would not support restrictions in New Zealand based on non-existent hypothetical risks.
    • The debate often seems to gravitate towards restrictive conclusions about sex-selection when considered in the widest social context, but when many individual situations are considered, such as family completion, avoiding diseases, or when lesbian women are to be parents, it is clear that such factors could help to justify this choice.
    • NZORD supports the implication in the Bill that this area is more appropriately dealt with by the informed consent and medical ethics processes, rather than by law or regulation.
  9. NZORD also supports the exclusion of provisions that were in the previous Bill, such as germ line genetic modification, non-reproductive cloning and mandatory genetic screening. We believe the ethics committee/Ministerial Advisory committee framework is the appropriate way to deal with such issues, and any other new and potentially controversial issues that might arise in the future.
John Forman
Executive Director