Prenatal Testing Background
The ethical issues associated with prenatal screening have come to the fore in New Zealand in the last few months. In March 2007 the Ministry of Health released "A Report of the Antenatal Down Syndrome Screening Advisory Group to the National Screening Unit, January 2007." In the foreword of this report Dr Paul Harper notes that in New Zealand "screening tests [for Down syndrome] have crept into practice in an ad hoc manner with little consideration about the most appropriate tests to use or the ethical and social consequences of this type of screening."
Confronting the Distortions: Mothers of Children with Down Syndrome and Prenatal Testing
Dr Lisa Bridle
Prenatal diagnosis represents the most immediate and widespread application of the current explosion of genetic knowledge and technology. Presently hundreds of genetic conditions can be identified through prenatal diagnosis, although testing commonly focuses on chromosomal analysis and testing for neural tube defects (Wertz 1992:162). The major diagnostic tests are diagnostic ultrasound, amniocentesis and chorionic villus sampling (CVS). In recent years, there has been a drive to confirm test results earlier in pregnancy both by performing these tests earlier and by developing faster methods of chromosome analysis. The development of screening tests, including first trimester ultrasound and maternal serum screening tests, has already reshaped the landscape of prenatal diagnosis. Prenatal testing, once limited to women considered "high risk", is increasingly a routine part of all pregnant women's antenatal care.
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.
Whangai, Surrogacy and Adoption
Michael McCabe
Issue 26, November 2008
This paper, in its original form, was delivered to the Inaugural Australian National Colloquium on Bioethics on "Conscience in Professional Life" at Melbourne in January 2008. The Colloquium marked the formation of the Australian Association of Catholic Bioethicists under the aegis of the Sovereign Order of Malta.
A Summary of Key Points from Submission to Advisory Committee on Assisted Reproductive Technology [ACART] on the Use of Frozen Eggs in Fertility Treatment
Staff of The Nathaniel Centre
July 2008
Introductory Comments
A Catholic approach to the transmission of human life is characterised by two key beliefs: the dignity of the human person and, flowing from that, a belief that the context in which humans are conceived, and the means used, must reflect this dignity. The conjugal act is seen as the only means that is wholly consistent with the dignity of the human child. The use of technology in human reproduction is assessed as upholding the dignity of the human person to the extent that it assists but does not replace the conjugal act.
What ethical issues are relevant to using frozen eggs in fertility treatment?
The freezing of human embryos is always to be regarded as an affront to their innate dignity in so far as it suspends, and puts at risk, the inviolable right to life that is theirs. While not condoning IVF, we recognise that the technology which allows eggs to be frozen and stored might mean there are fewer embryos that are frozen and stored. Therefore, we are not opposed to the use of frozen eggs on the basis that we believe it may limit the harm that is associated with the storage and subsequent discarding of human embryos that is a characteristic of IVF infertility programmes.
At the same time we remain particularly concerned that this technology might lead to a significant increase in women postponing pregnancy for "social reasons". We note that ACART considers the freezing of eggs as "at best a backstop measure for those who are at risk of losing their fertility altogether, and that it would be unwise for women to rely on egg freezing for social reasons". We agree with this assessment for reasons that include, but go beyond, the obvious clinical contraindications of egg freezing. We would like to see this procedure limited to those requiring it for "medical" reasons as opposed to "social" reasons.
The posthumous use of frozen eggs raises similar ethical issues to the posthumous use of frozen sperm. We regard the use of assisted human reproductive technologies in such circumstances as inconsistent with the dignity of the child, because it intentionally deprives them of a relationship with a mother and a father for reasons that ultimately amount to the satisfaction of adult needs.
A Catholic approach to marriage, emphasising as it does the connection between the conjugal act and the transmission of human life, also rules out for moral reasons the reception of gametes from a third party.
Should the freezing of eggs become an established procedure?
While it is stated that "the risks to a resulting child associated with the use of frozen eggs are no greater than the risks associated with the use of frozen embryos or [IVF] generally" we also note that there have only been a relatively low number of children born from frozen eggs and that "it is still a relatively new technique". Therefore, while the available evidence may point to its safety, it has to be accepted that "a lack of data on outcomes for children born from eggs that have previously been frozen" means this technology remains largely experimental.
On that basis it seems premature to be declaring this an established procedure. It is our considered view, that for the time being, the use of frozen eggs for fertility treatment should occur against a background of ethical and medical oversight provided by a specialist Health Research Ethics Committee. There needs to be ongoing collection of data so as to better assess the outcomes and risks associated with the use of previously frozen eggs.
Should frozen eggs be able to be donated to others for use in fertility treatment?
Our reasons for arguing that the use of frozen eggs should be limited to the individuals they come from are the same reasons we use to argue against the donation of any gametes by a third party; the mutual and exclusive self-giving of the spouses that characterises the permanent and loving commitment at the heart of marriage calls forth a reciprocal respect that means couples recognise the right to become parents only through each other.
Should frozen eggs be able to be donated for research purposes?
We uphold the principle enshrined in New Zealand legislation and culture that transactions involving body tissue not be commercialised. On that basis, we see no reason to oppose the donation of eggs for ethical research projects. We remain concerned about the very real potential for the exploitation of women that would result from an increased demand for human eggs for purposes unrelated to fertility treatment.
We oppose all research using frozen eggs to create a human embryo. We are also opposed to all research involving the fusion of human gametes with gametes of other species so as to create human-animal hybrid embryos.
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Staff of the Nathaniel Centre – July 2008
Submission on the Use of Preimplantation Genetic Diagnosis - Saviour Siblings
Staff of The Nathaniel Centre - July 2008
Issue 26, November 2008
A Summary of Key Points from Submission to Advisory Committee on Assisted Reproductive Technology [ACART] on Guidelines for Preimplantation Genetic Diagnosis (PGD) with Human Leukocyte Antigen (HLA) Tissue Typing (Saviour Siblings)
Vatican Updates Catholic Teaching on the Dignity of Human Life
John Kleinsman and Michael McCabe
Issue 27, April 2009
A long-awaited new Instruction, titled Dignitas Personae - The Dignity of a Person, was released by the Congregation for the Doctrine of the Faith in December 2008. The specific aim of the new Instruction is to update Catholic teaching on human procreation and research involving embryos and human gametes in light of new developments in biomedical technologies. Its stated purpose is twofold: to contribute to the formation of conscience, and to encourage ethical research that is respectful of the dignity of every human being from the first moment of existence. After a first part in which fundamental principles and assumptions of an anthropological, ethical and theological nature are recalled, Parts II and III deal systematically with specific applications relating to assisted human reproduction and research involving stem cells and human genetics.
Dignitas Personae: The Dignity of a Person
Issue 27, April 2009
Synopsis of the Instruction on Certain Bioethical Questions
The Instruction is written in three parts: the first recalling key anthropological, theological and ethical assumptions and issues; the second addressing new problems relating to human procreation; the third examining new procedures involving the manipulation of embryos and the human genetic legacy. It is preceded by a short introduction and finishes with a short conclusion.