Who Gets Born? A Response from The Nathaniel Centre
Staff of The Nathaniel Centre
Issue 25, August 2008
Toi te Taiao: New Zealand's Bioethics Council, was formed with the aim of enhancing New Zealand's understanding of the cultural, ethical and spiritual aspects of biotechnology, and ensuring that the use of biotechnology has regard for New Zealanders' values.
In 2007 the Bioethics Council began an extensive process of consultation on the topic of pre-birth testing. The term pre-birth testing covers a wide range of tests that are available to a woman and/or her unborn child before and during pregnancy, from a simple urine test to more sophisticated diagnostic tests that can indicate whether an unborn baby has an abnormality or genetic condition. A rapidly developing form of pre-birth testing associated with in vitro fertilisation (IVF) is preimplantation genetic diagnosis (PGD), a test which involves taking one or two cells from embryos that have been created outside the mother's body.
Under the Human Assisted Reproductive Technology Act 2004 (HART Act) PGD is currently permitted in New Zealand for the prevention or detection of a genetic disorder. It is not permitted for non-medical sex selection or to alter the genetic constitution of an embryo.
On Thursday June 19, 2008 the Bioethics Council released its report to Government – Who Gets Born? The Report included a series of 11 recommendations which are acknowledged as being "those of Council members ... informed by the views of New Zealanders" (p.5).
In response to the Report staff members from The Nathaniel Centre prepared and released the following statement:
The report on the cultural, ethical and spiritual aspects of pre-birth testing provides a comprehensive and fair overview of people's thoughts and comments on this complex topic.
The process of deliberation has been a genuine attempt to listen to the breadth of views of New Zealander's and to foster a broader understanding of the differences in opinion on this complex topic. Having been involved as a participant in the process of deliberation, we commend the Council's efforts in bringing an awareness of the cultural and spiritual aspects of pre-birth testing to the ethical questions it raises.
The report clearly shows there is broad acceptance among New Zealanders that pre-birth testing must be regulated to some degree – this acceptance reflects a deeper awareness of the power that technology has to reshape our perceptions of pregnancy, parenthood and the way we think about and view children in a negative way.
Catholic teaching on human dignity asserts the inviolable right to life from the moment of fertilisation to death – this right is totally unrelated to questions regarding the quality of life. We are disturbed that there is a growing trend amongst some to equate the right to life with the absence of disease or with a certain notion of normality.
From a Catholic perspective all embryos are equal and deserve unconditional respect. Therefore, embryos with genetic abnormalities have as much right to exist and be selected as those who are supposedly free of genetic abnormalities. The availability of PGD in effect fosters a situation whereby the protections around the right to life of specific groups of persons are removed on the basis of their genetic makeup. This sets a bad precedent.
Evidence from overseas shows that, amongst some people, the availability of genetic testing technology is contributing to expectations of "perfect children". Our role, as parents, is to welcome our children in an unconditional way – this is what love demands. It seems to us that one of the critical issues highlighted by the report is the need to create a society that will welcome all children equally. Our efforts and resources first and foremost need to be aimed at the promotion of a just society.
We also note that the report has uncovered widespread public concern about the high abortion rate in New Zealand and a sense of dissatisfaction for this state of affairs. We welcome this finding while remaining concerned that the increased use of pre-birth testing has a potential to contribute to the further marginalisation of those who are most vulnerable in our society – those who are unborn and those who are disabled.
Among other things, the report highlights the pressure many couples come under upon receiving their test results to make "very rapid decisions" – this at a time when they are extremely vulnerable. This situation is hardly conducive to free and informed decision making. Given time and appropriate counselling, couples will be in a position to see the situation from a different and less emotive perspective which could lead to very different decisions being made.
While it is encouraging to read that information "must not present termination of pregnancy as the automatic option after a test result indicating a disorder", this does not go far enough. We would like to say that the debate is not just about choice and balanced information but also about paying close attention to the broader context in which couples are making their choices. It is of great concern to us that couples speak of encountering pressure from the health system to terminate a pregnancy on the basis of genetic test results.
We are also worried that it is will become increasingly difficult for couples to exercise a choice not to be tested or to continue with a pregnancy in the light of test results indicating a disorder. The proper role of pre-birth testing is to help the parents to prepare the best they can for their new child or to enable medical interventions that are aimed at the well-being of the child in-utero, not to eliminate certain types of children.
Sex selection for family balancing reasons takes us into new and uncharted territory. It takes pre-birth testing out of a medical context and allows its use for non-medical (social) reasons. We ask: "What then stops parents using the technology for other non-medical reasons that reflect nothing more than parental desires? Where will it stop? We believe that parenthood is about welcoming the children we are given rather that ordering them according to specific specifications. There is a liberating truth in knowing the unconditional nature of our origins.
The report makes it clear that many people were uneasy with the thought of parents using the technology for social reasons and that this would be paving the way for genetic interventions on embryos for the purposes of producing babies with certain "desirable" qualities. The Council thinks that further investigation of the reasons for apparent public concern about the use of PGD for sex selection is warranted (p.51) but then inexplicably recommends that there are insufficient reasons to ban it! This is quite astounding and illogical.
Technology and its use must ultimately serve the integral good of the human person. It is clear that if all of the recommendations of this report are heeded that we will be moving towards a society that is less just and less inclusive.
A full copy of the report Who Gets Born? is no longer available online.