5. The Bioethics Council’s thinking

5.1 Valuing human life

The sanctity of human life, and the need for policies and laws that recognise it, has been one of the most strongly-expressed views whenever the Council has sought public input on biotechnology issues. Once again, it emerged as a fundamental principle in these deliberations — whether it was framed in religious or humanist terms, whether expressed by Māori or non-Māori, and whether people supported or opposed abortion in some or all circumstances.

Talking about the importance of human life in the context of pre-birth testing revealed widespread public concern about the present abortion rate. This was expressed by people with widely diverging opinions about the permissibility of abortion. There seem to be no obvious or well-researched explanations for the prevalence of unwanted pregnancies, and this suggests a need for further research. However, as the project was not designed to discuss abortion and only a limited range of views was heard, this report does not address the issue.

Even though New Zealanders attach supreme value to human life, there is a wide spectrum of views about the practical implications of this commitment. Participants had wide-ranging views on whether an embryo in a laboratory has the same ‘right to life’ as a foetus in utero, whether one life can be prioritised over another (for example, a mother’s or her unborn baby’s, a sick child’s or an embryo’s) and in what circumstances it is acceptable to ‘interfere’ with nature. These questions are especially pertinent in the context of more controversial emerging uses of PGD, and our recommendations in this area appear in Section 5.6 below.

5.2 Decision-making

We gained a deep appreciation of the anguish and difficulties parents face when making decisions about, or as a result of, pre-birth testing. These decisions are never made lightly or easily, and they may give rise to lifelong regrets and doubts.

On the other hand, we believe that it is right that these decisions are made by the parents, with the support of whānau/family if they wish. It is also necessary and appropriate for the parent(s) to receive non-directive advice from health professionals and other experts (including non-medical experts) when making decisions. However, parents must remain the key decision-makers, including when considering whether to use PGD (see also Section 5.3). The Council considers that the parent(s), in partnership with fertility clinics and geneticists, must determine whether a disorder is going to cause a child to be ‘seriously impaired.’[Under the HART Order 2005 Schedule, Part 2, certain uses of PGD are permitted without Ethics Committee oversight providing the disorder will cause the child to be ‘seriously impaired’.]

In some cases, such as those involving technologies that have implications for society at large, it is also appropriate for citizens more generally to have a say in decision-making. This points to the ongoing need for sound regulatory frameworks and oversight by state agencies. Regulation and oversight can ensure that pre-birth testing developments (especially the more controversial uses of PGD) are not driven exclusively by those with the capacity to pay for expensive procedures, or those who will make money by providing those services. This is not to imply that commercial providers are in any way unethical: only that there is a clear role for state oversight.

We noted that, at present, most uses of PGD are ‘established procedures’ so do not require Ethics Committee oversight. However, the creation of tissue-matched siblings to enable the use of cord blood to treat a sick child is tightly regulated. We do not consider such restriction to be justified (see Recommendation 8).

We consider there is scope for changes that could make decision-making easier for the parent(s). In particular, we think that the important role that whānau or wider family members can play in decision-making — if the parent(s) choose to involve them — needs greater acknowledgement. It is not enough for this to be enshrined in the Health and Disability Commissioner’s Code of Health and Disability Services Consumers’ Rights:[See Right 1: Right to be treated with respect (“Every consumer has the right to be provided with services that take into account the needs, values, and beliefs of different cultural, religious, social, and ethnic groups, including the needs, values, and beliefs of Māori”) and Right 8: Right to support (“Every consumer has the right to have one or more support persons of his or her choice present, except where safety may be compromised or another consumer's rights may be unreasonably infringed). Available at http://www.hdc.org.nz/theact/theact-thecodedetail/] more needs to be done to ensure people know their rights and are able to exercise them. 

We gained a strong sense that there were very different world views underpinning the way people approached decisions about pre-birth testing. For Māori (although a wide diversity of viewpoints exist), the starting point for any decisions about pre-birth testing is likely to be the collective rather than the personal. The whānau, rather than the individual, is likely to be seen as central in the information-gathering and decision-making processes. The same may well be true for many other people. At a pragmatic level, this means health professionals, clinics and hospitals need to actively enable whānau to be present when test results are discussed and choices made, by making appropriate facilities available and allowing sufficient time for consultation with family members.

Although we appreciate that sometimes choices must be made rapidly (for example, following an amniocentesis), all steps should be taken to avoid rushed decision-making. Health professionals can help by making sure the parent(s) fully understand the findings, possible implications and next steps at every stage of pre-birth testing. This allows them the maximum time possible to deliberate and consult others if they wish.

We think it is important to acknowledge that pre-birth testing is not exclusively a women’s issue. We encourage the active inclusion of fathers at every stage of pre-birth testing, information-sharing and decision-making. However, we also note that New Zealand women who experience pregnancy are more likely than men to have prime child-rearing responsibilities and are therefore disproportionately affected by the consequences of pre-birth testing decisions (for example, raising a child with a disabling condition). Mothers, especially sole parents, may therefore require particular support. We note that the vast majority (more than 70 percent) of those who participated in the deliberations were women, and many had direct personal experience of the difficult decisions associated with pre-birth testing. 

Therefore, the Bioethics Council recommends that:

5.3 Information

The public deliberation process revealed a great deal about people’s current knowledge of pre-birth testing, and the kind of information that has shaped their views.

Firstly, we see a clear need for high-quality information for parents about the pre-birth tests that are available, what they involve, and the decisions that might need to be made as a result. We noted however that provision of information alone does not guarantee understanding: the key relationship is between understanding and choice, not simply information and choice.

Information about pre-birth testing should be allied to a publicity campaign aimed at increasing awareness of the value of early antenatal care in general; where parents do not know about pre-birth testing, this is often because they do not see a health professional in early pregnancy. In addition, more research is needed into the reasons why some women do not have tests such as ultrasound screening.

We also noted a strong desire for different kinds of information. People wanted something more than medical data and expert reports alone: they wanted information that acknowledged the cultural, ethical and spiritual dimensions of pre-birth testing and the decisions it requires. Health professionals cannot be expected to be experts in all these areas themselves, but they should be able to refer patients to appropriate support groups and other resources available in the community (and we recognise that there are many such groups, whose expertise and diverse perspectives could help shape information about pre-birth testing). Tapping into these community resources may involve additional training for health professionals, and coordinated assistance.

We see an important distinction between resources that inform people facing difficult decisions about pre-birth testing, and those that support them in their decision-making. There is a need to do more than simply provide printed material — often, the most helpful resources are people. We found that participants in the deliberative events who knew little about pre-birth testing often engaged most deeply with the issues when they emerged via personal stories highlighting how particular individuals were dealing with them. Personal perspectives, and those of non-medical experts such as counsellors, may be as valuable to those confronted by pre-birth testing decisions as advice from medical experts. There are also opportunities to make personal stories available by means of media such as DVDs, podcasts, film and TV.

Leaflets and posters should not be regarded as the only way to inform people or to increase understanding. This was often raised by Māori participants, who said korero was essential to allow the development of tikanga around pre-birth testing. Face-to-face dialogue remains the preferred way of sharing information and knowledge for many Māori and Pacific people.

We urge greater use of deliberative processes as a way of creating and deepening public thinking about how best to respond to the challenges of pre-birth testing. Our own deliberative events identified a thirst for this kind of participation, which can be built upon in the future. The tough social and ethical questions raised by pre-birth testing need to be aired in the public domain; it is especially difficult for parents to make hard choices if they have never before encountered the issue or had an opportunity to talk about it with others.

Therefore, the Bioethics Council recommends that:

5.4 Access

We heard a clear call for more equitable access to pre-birth testing services throughout New Zealand. There are two main ways to achieve this: increasing awareness of pre-birth testing (see 5.3 above for recommendations in this area), and making testing more widely available across the country.

We know that some women do not receive antenatal care early enough in pregnancy.[See Ministry of Health, 2007. Antenatal Down Syndrome Screening in New Zealand 2007: A Report of the Antenatal Down Syndrome Screening Advisory Group to the National Screening Unit. Wellington: Ministry of Health. Chapter 4.0.] We consider that more research into the reasons is needed, as pre-birth testing cannot occur without early antenatal care. We are also concerned that not all parents from families affected by genetic conditions have equal access to genetic counselling, which is especially relevant in the context of PGD. There is a shortfall of clinical geneticists and genetic counsellors in New Zealand — it has been suggested that there are perhaps as few as half the number required — and that many medical professionals lack knowledge of genetics.[See the Human Genome Research Project, Genes Society and the Future Volume II  (University of Otago, 2007), p21 and also Ramari Viola Port, He Whakamatautau pi tauo mo te mate pukupuku: Nga Tikanga a te ao Māori. DNA Testing for Cancer Susceptibility: The Needs of Māori. Unpublished PhD thesis, University of Auckland, 2007.] Genetic counselling services, as well as tests for serious conditions, need improved public funding.

We heard that some people believe that not all tests are currently available nationwide. This means that many women — especially Māori, Pacific, new migrant, rural and lower socio-economic women — face perceived barriers of cost and distance. However, there is a lack of information about precisely which tests are available in different parts of the country, who provides them and who pays.

Therefore, the Bioethics Council recommends that:

5.5 Living with disabling conditions

The parents of all children with disabling conditions — including those who decide to go ahead with a pregnancy after a disabling condition is diagnosed — need greater public support, both financial and social. Clearly, life is tough for these families. The decision to proceed with a pregnancy after a positive pre-birth test should not be dictated by a family’s personal resources.

We are concerned that as fewer people in the community have conditions such as Down syndrome, there may be community pressure on parents to avoid having children with these conditions. We consider that publicity campaigns reflecting the stories of families and communities living with disabilities/genetic disorders would increase understanding and acceptance in the community.

An important step is to ensure parents and families are better connected to the many existing resources and the voluntary support organisations already working hard in the community. The kind of support parents require will vary at different times and in different circumstances — people needing genetic counselling require other kinds of assistance than those who have received a positive amniocentesis result, or whose baby has just been born with a disabling condition.

Frontline health professionals, especially general practitioners and lead maternity carers, have a key role to play in linking families to resources and support. We strongly support the National Screening Unit Advisory Group’s recent call for more training of health professionals in this area.[Ministry of Health. 2007. Antenatal Down Syndrome Screening in New Zealand 2007: A Report of the Antenatal Down Syndrome Screening Advisory Group to the National Screening Unit. Wellington: Ministry of Health.]

Therefore, the Bioethics Council recommends that:

5.6 Future developments

While there are clearly public concerns about some of the emerging applications of PGD — such as non-medical uses, the creation of embryos to help sick siblings, and the selection of embryos that will not be at risk of developing particular conditions until later in life — people are also reluctant to draw firm distinctions between acceptable and unacceptable uses.

There are mixed reasons why the public has misgivings about establishing firm boundaries around PGD. Ambivalence about how best to balance individual freedoms with the social implications of expanding the use of PGD is undoubtedly one factor. We note too the significant part played by the media (including popular literature) in shaping public thinking, raising expectations and creating fears about PGD. More work is needed to better understand and develop public thinking, and to inform policies around emerging technologies.

Using PGD to create embryos that are tissue-matched to sick siblings

We have great sympathy for the parents of seriously ill children who contemplate this course of action. It has occurred only relatively rarely internationally, and as yet there is no evidence of psycho-social harm to the tissue-matched babies.[Jeanne Snelling, Embryonic HLA Tissue Typing and Made-to-Match Siblings: The New Zealand Position. Medical Law International, 2008, 9(1) 13-44.] However, more research into the ongoing effects is clearly needed.

At the same time, we share the concerns expressed by some participants for the rights and welfare of any baby conceived for this reason (which may or may not be via PGD: tissue-matched babies have also been conceived naturally). It is important that there is both protection and advocacy for tissue-matched babies, throughout the pregnancy/birth and beyond. In most cases, only the baby’s cord blood is needed to treat the sibling’s condition; however, it is possible that a bone marrow or organ transplant might be required later as well. This raises questions about whether children should be donors of bone marrow and/or organs, and whether it is appropriate for parents to make donation decisions on their behalf.

The HART Order 2005 does not include PGD with tissue typing as an established procedure. The interim guidelines provide that ECART may only approve applications if the sick sibling is suffering from an inherited disorder; it is not permitted to alleviate other disorders. We do not believe there is any reason to continue making this distinction, as outlined in our submission to the Advisory Committee on Assisted Reproductive Technologies in September 2007.

Therefore, the Bioethics Council recommends that:

Using PGD for sex selection

We support the use of PGD to select embryos of a particular sex where it is done to prevent a child being born with a sex-related condition. As far as sex selection for the purposes of ‘family balancing’ is concerned, we have not heard sufficient cultural, ethical or spiritual concerns to justify banning it — providing PGD is undertaken at the parents’ own cost. We think further investigation of the reasons for apparent public concern about the use of PGD for sex selection is warranted. The reasons for people’s concerns about sex selection for family balancing remain unclear. Perhaps they stem from a perception that this is a comparatively trivial application for a technology with profound implications, or they may be related to distaste for practices in some countries where girl babies are routinely aborted or abandoned in favour of boys.

Therefore, the Bioethics Council recommends that:

Using PGD for late-onset or low-penetrance conditions

Currently, the HART Order 2005 allows for PGD without Ethics Committee oversight where it is used to prevent or treat a ‘single gene disorder’ and there is a 25 percent chance of an affected pregnancy. The term ‘single gene disorder’ is not defined, so seemingly applies to late onset or low penetrance inherited conditions.

Most people who commented found it difficult to formulate limits in this area, but tended to think that the parent(s) would be in the best position to decide — especially if they had experience of the condition in their families.

Therefore, the Bioethics Council recommends that:

Using PGD for carrier testing

Currently the use of PGD is an established procedure providing there is evidence that the future individual may be seriously impaired as the result of the disorder. In most cases this would exclude using PGD for carrier testing — for example, in a family affected by cystic fibrosis — as a carrier usually does not have the condition.

We heard little comment about the use of PGD to select against unaffected carrier embryos. We consider that this should be a matter for parental and clinical judgment rather than requiring Ethics Committee approval.

Therefore, the Bioethics Council recommends that:

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