Response to ACART [1] Draft Guidelines on the Use of Donated Eggs in Conjunction with Donated Sperm
Staff of The Nathaniel Centre
Issue 27, April 2009
Background
In August 2007 staff of The Nathaniel Centre responded to an ACART Consultation Document on various aspects of artificial reproductive technologies that included a question as to whether an embryo should be allowed to be created for reproductive purposes using a donated egg and donated sperm. While this particular procedure has been classified as an assisted reproductive procedure since 2005, there have never been any guidelines enabling the procedure to be approved by the Ethics Committee on Assisted Reproductive Technology (ECART).
Dr Lisa Bridle on mothers of children with Down syndrome
Our main feature is a wonderfully inspiring piece written by disability advocate and mother Dr Lisa Bridle. Lisa, reflecting on the birth of her son Sean as well as the stories of other mothers of children with Down syndrome, raises a number of key questions about the increasingly routine practice of prenatal screening and diagnostic testing. The mothers whose stories are recounted want the public to know that having a child with a disability is not a tragedy and that disability does not come to dominate their lives. The able-bodied must not have the final word on the 'problems' of disability.
Submission to ACART on extending the storage period of gametes and embryos
Preamble:
The Human Assisted Reproductive Technology Act 2004 (the HART Act) sets a maximum storage period of 10 years for sperm, eggs and embryos unless the Ethics Committee on Assisted Reproductive Technology (ECART) approves extending the storage period. Parliament recently amended the HART Act to clarify that the 10-year period begins from 2004 or later, depending on when the gametes or embryos were first stored. This applies even where gametes and embryos were stored before 2004.
The amendment also clarifies the powers of ECART and the Advisory Committee on Assisted Reproductive Technology (ACART). When deciding applications for extending the storage period of gametes and embryos beyond 10 years, or beyond an approved extended storage period, ECART must use guidelines issued by ACART.
In February 2010 ACART released its proposed guidelines on extending the storage period of gametes and embryos and invited interested parties to respond.
Introductory comments:
In order to avoid a statement of an explicitly philosophical nature, Catholic teaching refrains from defining the embryo as a person. However, as science demonstrates, there is undoubtedly a personal presence at the moment of the first appearance of a human life and a continuity in development from that point on. We hold that such continuity does not allow for positing either a change in nature or a gradation in moral value for the entire span of that individual human life. On this basis the question arises: "How can a human individual not be a human person?" It would never be made human if it were not human already.
Therefore, we reason that the embryo is to be respected and treated as a person from the moment of conception. It follows from this that the rights accorded to a person must be recognised from that same moment. Chief among those rights is the inviolable right of every human being to life, that is, the right not to be killed.
Because it interrupts the natural continuity in development, the cryopreservation of embryos represents an affront to their innate human dignity. Furthermore, it also exposes them to serious risks of physical harm and even loss of life given that a high percentage do not survive the process of freezing and thawing.
In addition, the storing of embryos means that their future (their right to life) becomes subject to decisions made by others; firstly those responsible for bringing about the human life, the commissioning parents in conjunction with the fertility clinics; secondly the state, when regulations (such as those governing the length of time embryos may be stored) mean that an embryo's right to life can also become dependant on various forms of legal concession. It is ethically inconsistent that a fundamental right becomes contingent on concessions, legal or otherwise, conferred by others.
Such regulations, even when they are well intentioned, can easily add to the injustice associated with storing embryos because they may well constitute a further obstacle to the embryo being able to continue on its rightful path of human development. The shape of the regulations may also present a direct obstacle to parents who are genuinely committed to implanting their stored embryos, as well as confusing the question of who is ultimately responsible for their welfare.
Taking into account all of the above, the question of further extending the storage period of embryos poses a unique moral dilemma from our perspective. On the one hand it can only be interpreted as the continuation of a serious injustice because it involves an ongoing risk to their viability and obstructs their right to develop. On the other hand, we recognise that in certain circumstances extending the storage period may be what is required to ensure that particular embryos are given a chance to live the life that is already rightfully theirs.
We accept that by seeking to extend the period that embryos may be stored, the proposed guidelines are, at least in part, designed to make additional provision for embryos to be implanted and to continue the path of their development. To this extent, and while it is regrettable that there are so many embryos in storage, we appreciate that robust guidelines have the potential to impact positively on what will still remain, at best, an unjust situation.
Obviously, the moral issues that characterise the storage of gametes differ because of the differing moral status of gametes when compared to embryos.
Responsibility for making applications to ECART for extending the storage of gametes and embryos:
In light of their moral status, we are concerned about the question of who is morally responsible for particular embryos. In the first instance we believe that it is the commissioning parents who are responsible. It is therefore most appropriate that they should be able to initiate and empower the application process and be perceived as doing such.
We believe that the current wording of the guidelines, insofar as it focuses largely on the role of fertility clinics and researchers, fails to adequately highlight the primary moral responsibility of the commissioning parents. In line with this we believe that all applications relating to the storage of embryos and gametes for fertility reasons need to be in the name of the commissioning party rather than the clinic.
That said, we understand that from a pragmatic point of view it is best that the application process be managed by a clinic because of their access to key information as well as in the interests of consistency. In other words, our criticism is not so much about the process being suggested as it is about the presentation of the process and its implications for people's understanding of what is at stake.
In the case of gametes being held for research purposes, we are happy that researchers take responsibility for any application for extending the storage of gametes knowing that the consent of the donors is integral to this process. Our stance on this reflects the fact that the reasons for such an application are ultimately for the benefit of the researcher rather than the donor. This makes such an application different in essence from any application to extend the storage of embryos as well as different from applications to continue storing gametes for fertility reasons.
Reasons ECART may approve extending the storage of gametes and embryos:
We note positively that the guidelines anticipate couples with 'surplus' embryos created from their own gametes seeking an extension period for the purposes of finding and donating their embryos to a suitable couple.
In line with our introductory comments we agree that the reasons for extending the storage of gametes and embryos must be limited to those individuals seeking fertility preservation in cases where the initial reasons for storage relate to an underlying medical need. We understand, and approve of the fact, that this will rule out those seeking fertility preservation for 'insurance' or 'lifestyle banking' reasons. To act otherwise would only lead to the untenable situation where we would have even more embryos being created and stored for reasons of personal convenience, exacerbating further what is already a problematical state of affairs.
We also approve of the fact that the guidelines rule out extending storage in cases where treatment is prohibited or precluded at the time of an application for extending storage. Again, to act otherwise would only lead to greater numbers of stored embryos unlikely to be implanted.
Informed Consent Requirements:
We wish to make the observation that the provisions around gaining consent from gamete donors for extending the storage of embryos unintentionally create a situation where commissioning couples (whom we argued earlier should have primary moral responsibility for embryos in storage) may be prevented from exercising their rightful parental responsibility.
We foresee situations where couples desiring a child, perhaps wanting a full sibling for other children, and with a keen sense of accountability for the embryos in their care, find themselves unable to carry through their parental commitment because of an inability to make contact with, or otherwise gain consent from, those who originally provided the gametes. Even while we uphold the importance of consent as a key principle in ethical decision making, such a situation strikes us as patently unjust, both from the perspective of the embryo and the commissioning parents. It creates an impossible hurdle to life for the embryo while also creating (abandoning) a particular class of embryo for whom no-one is able to be responsible. It also frustrates the would-be parents whose desire to have a child, which was the source of the original consent sought, has remained singularly constant.
On the other hand, we recognise that giving birth to children who may not be able to ever contact their biological parent or parents (or whose biological parents may not want contact) is also patently unjust and something that would impose a burden on any child that came to be born.
This is a good illustration of the way reproductive technologies have the ability to fracture the inherent relational integrity that should exist between parents and children. It also illustrates some of the unintended and undesirable consequences associated with separating the genetic, gestational and social dimensions of parenting, something that characterises many assisted reproductive procedures. More particularly, it highlights for us the contradictions and inconsistencies inherent in allowing heterologous IVF (i.e. relying on sperm and/or ova donation), something that we have previously stated we are strongly opposed to.
While hoping that honest reflection on the consequences of using heterologous IVF may discourage its use, we acknowledge that the practice has already been embraced by some in our society. Without wanting to further encourage its use in any way, and mindful of the situation we have described above, we suggest that ACART advocate that provision for extended storage of embryos be included as a standard part of the original consent sought from gamete donors.
Book Review - The ethics of abortion: Women's rights
John Flynn LC provides a broad overview of the key arguments offered by Christopher Kaczor in his book, The ethics of abortion: Women's rights, human life and the question of justice. While religion provides cogent arguments against abortion, the case as to why it is ethically unjustifiable can also be made on philosophical grounds.
Audrey Echevarria on the ever increasing practice of 'outsourcing pregnancy'
In another thought provoking piece, triggered by Nicole Kidman and Keith Urban's reference to their child's mother as a "gestational carrier", we reprint an article by Audrey Echevarria on the ever increasing practice of 'outsourcing pregnancy'. The commercial surrogacy that lies at the heart of the growing business known as 'Reproductive Tourism' is fostering a view that children are dispensable commodities.
Richard Stith on the moral status of the human embryo and fetus
Finally, in a very readable article, Richard Stith provides a philosophical framework for making sense of the different understandings people have regarding the moral status of the human embryo/fetus. The widespread vision of the embryo and fetus as "under construction" is the key to understanding why good people may find pro-life arguments to be non-rational or absurd. The construction versus development approach may also help to clarify mutual misunderstandings regarding the moral acceptability of euthanasia.
‘After-birth abortion’ a new euphemism?
P J Cullinane
The recent claim of academics Giubilini and Minerva, made in the online Journal of Medical Ethics that the killing of new-born infants (referred to by the authors as "after-birth abortion") is permissible gives rise to many questions that should not be evaded.
Academic standards
A cluster of questions arises around standards of academic scholarship. The issue is not whether there should be academic freedom or the right to publish dissenting opinions. The issue is whether academic freedom now means that provided certain procedures are followed, 'anything goes' as to content. Do universities still insist on objective levels of achievement and an academic's ability to think clearly? Giubilini and Minerva claim that a child is not a person until he or she is capable of attributing a certain value to their own life, able to make plans for the future, and able to appreciate that they are actually alive. But the authors admit they do not "know when exactly" this occurs. The implication is that at some stage in the process of becoming aware, the baby might not yet be, or might already be, a person.
Ethically, the situation is no different from that in which the deer shooter knows that the moving object shrouded by the trees might be a person, or might be a deer. The very existence of such doubt forbids shooting it on the mere probability that it might not be a person. If a baby must first become aware in the ways Minerva and Giubilini require for it to become a person and if they don't know exactly when that occurs, then they may not condone its killing. This is basic stuff.
Power over others' lives
A further cluster of questions surrounds the implied claim that to some is given the power to decide who shall live and who shall not, for reasons which Giubilini and Minerva acknowledge need not have "anything to do with the foetus' health", as is the case with abortions. In fact, the reasons they give to justify the killing might simply be that the mother no longer has the time, money or energy to care for the baby. Others have described this claim as 'chilling', and some have observed that expecting doctors to be agents of death effectively changes their basic role of preserving life.
Giubilini and Minerva accept that adoption is an option, but say it could cause undue psychological distress to the mother. Are they not aware of all that has been happening in relation to post-abortion trauma and its long-term damage to women (and to some fathers as well)?
The real challenge
The one thing going for Giubilini and Minerva's argument is the implied and even explicit parallel with abortion. If it is acceptable to kill babies inside the womb – for other persons' reasons – then it is likewise acceptable to kill them outside the womb – for other persons' reasons. In this way they effectively, even if unintentionally, challenge a hypocritical society over how glibly it accepts abortion. They argue that killing a new-born should be permissible "in all cases where abortion is, including cases where the new-born is not disabled".
The challenge to re-examine what we are allowing in the matter of abortion is all the more timely because some of the reasons previously used to support more liberal abortion have been proved false. It is reported that in the USA
"In the years leading up to the legalisation of abortion its advocates assured everyone that legalised abortion would reduce child abuse, strengthen family-life, and improve society. But all the evidence shows that after three decades of legal abortion, all these problems have gotten worse". (Janet Morana, Address to the Pontifical Council for the Family, Vatican City, 26 March 2010)
This is hardly surprising because abortion perceived as a solution to social problems requires a certain blunting of sensitivity and of conscience due to accepting the violence involved in the dismembering of babies in the abortion process.
This brings us to the questions that need to be asked about the role of law, its present formulation in New Zealand, and the responsibilities of our law-makers. The practical interpretation of New Zealand's current laws is consistent with the USA's watershed Court decision (Roe vs Wade, 1973) which allowed abortion at any time for any reason. But the legal situation in USA has not stood still. Individual States, with acceptance by the Courts, have made many amendments corresponding to experience and to a greater recognition of human rights. For example, parental involvement laws that require parents to either be informed of, or consent to, the abortion of a minor-aged daughter before it can be performed; informed consent laws that require that women seeking abortion be given accurate information about the development of the child, the alternatives to abortion, and the risks of the procedure; foetal homicide laws that proscribe the killing of a child other than by abortion – so-called partial birth abortion; ultrasound laws that require abortionists in some States to provide the patient with an opportunity to see her unborn child by ultrasound; and an Unborn Victims of Violence Act which protects the unborn from acts of violence other than abortion.
These restrictive modifications have come about because of the increasing opposition of feminist groups who have recognised the potentially life-long harmful consequences of abortion for women. In other words, socially and politically, there has been a strong and still growing movement away from permitting abortions to stricter limits on them. It is only lack of courage among NZ politicians that leaves our laws lagging behind these developments.
It might give heart to our law-makers to learn that far from being a denominational or even religious issue, the increasing alarm and opposition to abortion is being found across a broad section of the community, and especially among young people. They may also take heart from the sciences. The biological sciences have long-since taught that the fertilised ovum is already 'a microscopic human being' even before it is implanted, and that once implanted it requires only time and nurture to develop, grow and prepare for birth – in utero it already is a separate unique human being. The medical sciences are frequently having to deal with post-abortion trauma, which in some cases does not manifest itself until years later. These are matters our elected representatives are not entitled to ignore, because looking after the well-being of all citizens, especially the more vulnerable, is part of their core business.
A consistent ethic
If persons are defined in terms of what they are capable of doing, rather than what they are, and if problems of 'time, money or energy' are sufficient reasons for killing those who are more dependent on others, then the threat to life is at both ends of our lifetime.
The threat exists also for those in between birth and death in as much as social and economic planning too easily reduces human wellbeing to just one or other aspect of well-being – e.g. one's ability to contribute to the economy. Planning based on reductionism of any kind tends in the direction of a privileged position for the strong, and a kind of Darwinian attrition of the rest. Only by recognising the sacredness of human life and the innate dignity of every person, premised on their being human, can we arrive at a consistent respect for them at every point on the spectrum between conception and natural death. There is opportunity here for parliamentarians who are interested in finding a consistent, cohesive and coherent basis for all social and economic planning.
Bishop Peter Cullinane is Emeritus Bishop of Palmerston North Diocese and a former New Zealand Catholic Bishops' Conference deputy for The Nathaniel Centre.
Footnote
1 Giubilini, A., and F. Minerva. "After-Birth Abortion: Why Should the Baby Live?" JME Online First (2012). http://jme.bmj.com/content/early/2012/03/01/medethics-2011-100411.full.pdf+html.
After-birth abortion: why should the baby live? A disability perspective
Martin Sullivan
When I first heard reports of a couple of bioethicists promoting the idea of after-birth abortion I thought, “they’re at it again; coming up with more justifications for killing us; the b******s!” Of course not all bioethicists hold to this position (as evidenced by the number who have since expressed outrage at the notion of after-birth abortion) but I find it profoundly alienating and quite sad that the only time the discipline or bioethicists themselves seem to show any interest in disability and disabled people is when they are arguing over when its OK to kill us.
As a disabled person who knows his history, I can never separate these kinds of arguments from the situation which occurred in Nazi Germany when over 200,000 disabled people – ‘useless eaters’ ‘life unworthy of life’ - were murdered in the Aktion T4 euthanasia programmes[i]. Justifications for after-birth abortion sound awfully like a reopening of that door, a rekindling of the Silent Holocaust; that is why my response is so personal, so visceral.
Unfortunately, this after-birth abortion debate flows logically from the zeitgeist of consumer capitalism where the body is seen as a prime site of consumption and the neoliberal precepts of individual freedom and choice rule. In this environment ableism thrives. Ableism promotes a particular kind of ‘able’ self and body as fully human. In light of that, any impairment or disability is seen as inherently negative and should be ameliorated, cured or eliminated[ii]. While Giubilini & Minerva’s argument is not entirely ableist insofar as they hold that after-birth abortion should apply to any abled or disabled infant who qualifies for abortion as a fetus, it begins with and builds upon ableist assumptions about children with ‘severe abnormalities’ whose lives are consequently judged as not worth living.
They begin by accepting that while it is easy and common for many in our contemporary society to conclude that living with severe abnormalities is not in the best interest of the child, it is hard to find definitive arguments supporting the case that such life is not worth living. At this point an article of faith transmogrifies into scientific certainty as they assert that the potential of a child with Down syndrome can never equal that of a “normal’ child”. Somewhat conveniently, their paper overlooks the question: potential for what? Next, Giubilini and Minerva, somewhat incredulously, note that, despite this lack of potential, people with disability “are often reported to be happy.” But these two important pieces of evidence – no definitive support for the “unworthy lives” thesis and severely impaired people reporting that they in fact have happy lives – are overridden by Giubilini and Minerva appealing to the “unbearable burden” thesis as justification for after-birth abortion.
The “unbearable burden” thesis states that a child with severe impairments will impose “unbearable” emotional and financial burden on the family and the financial costs of social provision on society as a whole. Now the argument about the permissibility of after-birth abortion of such infants is justified on the basis of empirically verifiable claims about an infant’s financial impact on the family and broader society. This marks an adroit shift – a claim that rests on assertion is suddenly presented as having a degree of ‘logic’ and legitimacy it does not warrant. Also, somewhat conveniently, the burden thesis overlooks those parents who report that while not necessarily without struggle, their lives have been enriched by the child they refused to abort.
This is very much a ‘final solution’ which is not only abhorrent to me, but one which I find deeply ableist and difficult not to take personally. I would argue that notions of “lives not worth living”, “potential” and “unbearable burden” are so context dependent, so deeply embedded in the social milieu, that it would be far more humane to address those variables before adopting a final solution. Ultimately, the solution lies in how much tax we are prepared pay in order to provide a just social wage which covers education, health and housing as well as a high enough welfare safety net so people don’t bruise themselves when they fall into it.
To be fair, Giubilini and Minerva do spend some time in philosophical reflection on when a human becomes a person and at what point after-birth abortion is no longer permissible. For someone who sees dignity and value in all human life, Giubilini and Minerva may as well be philosophising about how many angels can fit on the head of pin for all the good it will do in justifying after-birth abortion to me.
But I guess this is what many philosophers and bioethicists do: they engage in logic games and in this particular one they reduce themselves to playing the role of instrumental technocrats. It is a dangerous game they have begun playing because it is all theory about vulnerable lives and this is far too serious an issue to play with.
Undeniably, the most chilling aspect of this paper is its advocacy of after-birth abortion for those infants not wanted. Not-wanted! As someone who lives with the shadow of the Silent Holocaust, these logic games are the opening gambit in a deadly game taking place in straitened times; times where it is quite possible the “unbearable burden” thesis may gain traction. Under these conditions, no matter how repugnant, the bioethicists’ argument that after-birth abortion is permissible in cases where the potential life is deemed not worth living, too much of a burden or too expensive, may sound like commonsense. I cannot help thinking that it would not be too long before the justifications for a euthanasia programme for those ‘useless eaters’ began to be heard again.
Martin Sullivan, PhD, is a Senior Lecturer in disability studies and social policy at Massey University.