6. Summary of recommendations

Recommendation 1

Decisions about whether to have pre-birth testing, and what to do in light of the results, should be made by the parent(s) within the existing framework of the Code of Rights.

• When making decisions, parent(s) should have access to advice and counselling that is unbiased, non-directive and includes medical and non-medical information.
• We commend the inclusion in the HDC Code of Health and Disability Services Consumers’ Rights of the right to have the opportunity to consult with whānau when making decisions. Efforts should continue to be made to ensure parents are aware of these rights.

Recommendation 2

High-quality, appropriate information about pre-birth testing is made available by health professionals to parents and to the wider community. Information needs to be:

• accurate and comprehensive
• timely: it must be made available before each test or stage of testing, giving the parent(s) as much time as possible to think about the choices
• non-prescriptive: in particular, it must not present termination of pregnancy as the automatic option after a test result indicating a disorder
• wide-ranging: information for parents should recognise the wider dimensions of pre-birth testing, and contain contact details of support groups, counsellors and cultural advisers
• part of best practice: the requirement for health professionals to give such information should be built into their best practices, training, assessment and audits, contracts and services, as well as being part of the role of advisory groups
• appropriate: information and resources must be available in a range of forms and media appropriate to the needs of different individuals and communities, and disseminated through appropriate fora such as kanohi kit e kanohi (face-to-face dialogue) and through language of choice (Māori, English, Pacific and other languages as appropriate).

Recommendation 3

Research is undertaken to determine why some women do not have pre-birth tests such as ultrasound scans.

Recommendation 4

Steps are taken to recruit and train more genetic counsellors and geneticists and to provide an adequate national service, with particular reference to cultural needs and differences.

Recommendation 5

The Ministry of Health continues to work with Māori health providers to identify barriers to antenatal care for Māori women, and The Bioethics Council supports further initiatives to eliminate these barriers.

Recommendation 6

The costs and benefits of better coordinated support services for the disabled should be reviewed.

Recommendation 7

Research is undertaken on the use of preimplantation genetic diagnosis (PGD) to create embryos that are tissue-matched to sick siblings. This work should primarily examine:

• the nature of public concerns
• whether tissue matched children are adequately protected by present laws
• the nature of tikanga Māori associated with this use of PGD.

Recommendation 8

The present distinction between using preimplantation genetic diagnosis to create embryos that are tissue-matched to sick siblings suffering from inherited conditions and using it to help siblings suffering non-inherited conditions should be removed. The only requirement should be that the sick sibling is suffering from a serious condition for which no other treatment is reasonably available.

Recommendation 9

There is insufficient cultural, ethical and spiritual reasons to prohibit the use of PGD for sex selection for social reasons such as ‘family balancing.’

Recommendation 10

The current provisions allowing the use of preimplantation genetic diagnosis (without the Ethics Committee on Assisted Reproductive Technology’s oversight) for late-onset or low-penetrance conditions be retained.

Recommendation 11

The use of preimplantation genetic diagnosis to select against carrier embryos be included in the HART Order 2005 as an established procedure.

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