- Living in Testing Times - Prenatal Testing and

Procreative Responsibility

John Kleinsman / Director - The Nathaniel CentreThe NZ Catholic Bioethics Centre

"Ours is a world of nuclear giants and ethical infants."

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What is bioethics?

“Our attempt to know & understand how we are to live and what we are to do (or not to do) to be (or not to be) …” E. Dunn

… particularly in regard to …

… guiding moral choices in a medical context and in providing principles by which conflicts in the decision-making process may be resolved.

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“The question that ethics attempts to answer is not simply ‘what must we do?’, but more fundamentally ‘what do we wish to become?’ We are mainly responsible for our own evolution. Human evolution no longer proceeds as a result of chance and natural selection but through our personal and collective choices. Thus what we wish to become reflects above all the image we have of ourselves.”

•OTAGO BIOETHICS REPORT, Vol 6 No. 2.

What is bioethics?

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“Human nature … is open. There is always a tension between what [humankind] is at a given moment in history and what may be possible tomorrow.”Neil Brown

We believe that all human beings have a role as co-creators with God, and as participants in the evolutionary process. New Zealand Catholic Bishops’ ConferenceSubmission to the Royal Commission on Genetic Modification, October 2000

Human Nature

Preimplantation Genetic Diagnosis

NZ Guidelines released by NECAHR in May 2005“The technology is a remarkable advance that gives people with genetic disorders the opportunity to have children who are free of conditions that have devastated generations” NZ Herald

“It’s a terrifying thought that people out there believe my life isn’t worth living, isn’t worth replicating – so they would try to breed it out.”

Paul Gibson, Policy Manager, CCS

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WHAT HAS CHANGED IN HUMAN REPRODUCTION?

50 years ago …

Whether and when a child was conceived was largely a matter of chance Where it was conceived was always in a woman's body. How life was transmitted to the child was through sexual reproduction.

Material sourced from Margaret Somerville – Biotechnology and the Human Spirit

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WHAT HAS CHANGED IN HUMAN REPRODUCTION?

Now …

When human life is conceived can be controlled through contraception.

Where it is conceived; In vitro fertilization (IVF) now allows the creation of embryos outside the body of a woman.

How it is transmitted is no longer limited to sexual reproduction: cloning is asexual replication; in the future, embryos may be created from the union of two ova, two sperm, or, possibly, from the individual genes that make up a living human.

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Dana Wensley

“In general terms, procreation was in past times seen as an act of acceptance of the children which fate bestowed.”(Choosing genes for future children, 2006, p. 165).

chance

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Dana Wensley

“Procreation is now perceived in a radically different way. It is no longer seen as primarily an act of acceptance of the children bestowed by fate. Children are now able to be shaped and selected so as to meet the desires and wants of parents.” (2006, p. 165)

control

Current Context

• Greater focus on ‘reason’ since the Enlightenment • The rise of individualism (the notion of the person as a

separated ‘subject’) • Sense of separation between humankind and the natural

order (including our own bodies)• Desire to take control over the randomness of nature• Loss of respect for authority – the individual is seen as

the locus of moral decision making – importance of choice

• ‘Outcomes’ matter (‘the end justifies the means’)

In a world in which we have come to see ourselves as separate from nature, and in which nature has come to be regarded as ‘other’ – essentially as a ‘random brute amoral force’ – it follows that nature is something to be tamed and controlled.

The need to exert control becomesto be seen as a significant expressionof what it means to act virtuously

Current Context

Why leave things to chance?

• Why be passive in the face of potential diseases and/or illness?

• Why would we not want to ensure our children are the ‘best’ children we can have?

• Surely prenatal intervention is merely an extension of the way in which parents actively shape their children’s destiny post birth?

Procreative Responsibility

• As a consequence of technological developments (i.e. as a result of attributing less to chance and more to choice), couples are now perceived as being more personally responsible for the sorts of children they bring into the world.

• Catholic moral teaching, because of its opposition to abortion and IVF and practices such as preimplantation genetic diagnosis (PGD) and saviour siblings, is increasingly being seen as outdated and irrelevant, if not outright ‘irresponsible’.

A theological response

Some Catholic-Christian assumptions:

• God is the author and creator of all life• All life is a gift from God• New human life involves an act of collaboration

between God and human beings• Human-kind as co-creators

In speaking of procreative responsibility we need to think about divine responsibility as well as human responsibility.

Catholic Moral Tradition

Catholic teaching documents such as Evangelium Vitae and Donum Vitae identify the problems associated with increased human power and control in their arguments about the responsible transmission of human life. In Evangelium Vitae, for example, it is written that “God alone has the power over life and death” and the appropriation of this power by humans is described quite bluntly as the usurping of God’s power.

How adequate is this response theologically speaking?

Understanding God’s Nature

• The notion of God as the author or arbiter of life and death invites us to view God from within a paradigm characterised by ‘power’.

• Is this adequate? Why? … Why not?

• Can we interpret this statement from an alternative perspective?

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What is God’s Nature?

Why is this an important question?

We are created in the image and likeness of God?

If we are to collaborate with God and to image God in how we live and how we look at ourselves and the created world then the question of how we understand God is critical.

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An alternative theological paradigm

• Benedict XVI writes of “the astonishing experience of the gift” and further describes human beings as “made for gift.” He also speaks of the nature of ‘gift’ as a sign of God’s presence in us as well as a sign of what God expects from us.

Benedict XVI, Caritas in Veritate (2009)

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Brian Johnstone

• Who is God? God is giving.• God is knowable as the community of persons – Trinity• The source of the community of the Trinity is nothing

less than the “constitutive self-giving” of the persons in the Trinity

• The self giving of God is apparent to humankind through two fundamental innovations:

- Creation- Incarnation

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Christian Anthropology• Humankind, by virtue of having received the gift of

life from God, comes to participate in the actuality of God’s being.

• Because divine reason is characterised by giving, then human reason can grasp that the basic norms of human reason are likewise characterised by receiving and giving.

• Giving and receiving emerges as a fundamental paradigm for understanding human living

• We discover the meaning of ‘truth’ in the framework of gift and receiving and giving.

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What is a True Gift

• What is a gift?

• When is something not a gift?

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The Gift to a Stranger

The gift to the stranger is a paradigmatic form of genuine giving and receiving.

Examples:• Donation of blood• Donation for emergency aid• Random acts of kindnessThe gift to the stranger is voluntary and negates any obligation to reciprocate – truly dis-interested.

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The Gift to a Stranger• The theme of the stranger lies where we least expect

it, at the heart of the family: • “The family’s nucleus is necessarily formed by two

strangers” who come together in a loving commitment.

• Any child who results from the woman becoming pregnant is also a ‘stranger’; genetically speaking, and therefore humanly speaking, every child is a unique person.

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The Gift to a Stranger

In this way it might also fruitfully be argued that the gift of life when it naturally occurs is a gift to a ‘stranger’ by two ‘strangers’. • Godbout and Caille

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Human Procreation

• Every child is a gift of God• We are each of us the result of ‘chance’• God allows the natural processes to work• God does not act directly on the physical or

biological elements required for human conception

• God eschews the use of such power – WHY?• God desires we experience our lives as pure

‘gift’ / grace 25

Human Causality

If a child is properly a divine gift because a particular type of divine causality is avoided then, theologically speaking, it needs to be argued that humankind’s role in the transmission of human life must also avoid a certain type of causality if it is to mirror the nature of divine giving.

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“The responsible transmission of human life may be judged according to the way in which it conforms to the notion of the sincere gift of self …”

“The generation of a child must be the fruit of the mutual giving of the couple which is realised in the conjugal act.”

Mulieris Dignitatem

Procreative Responsibility

• Procreative Responsibility is best described as our responsibility to preserve the transmission of human life as an act of genuine giving and receiving

• The principle of genuine giving and receiving provides a point of reference for assessing the moral acceptability of using assisted reproductive technologies

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The Conjugal Act

The conjugal act

• … locates human conception within particular parameters that proscribe the ability of couples to control the outcome of human conception

• … is the sort of act that protects the transmission of human life as an act of genuine giving and receiving

• … is an instantiation of the gift to the stranger …

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Prenatal Testing

The use of prenatal testing has the potential to fundamentally alter the transmission of human life by virtue of the fact that the ‘child’ is no longer a ‘stranger’.

Prenatal Testing Now Available

Prenatal Testing

Prenatal screening/testing significantly modifies the traditional ‘absence’ of the child for large parts of, and in some instances for the entire duration of, a pregnancy, thereby changing parents’ (and also health professionals’) experience of pregnancy. It is now no longer true to define pregnancy as a ‘presence’ dominated by ‘absence’.

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Arthur Caplan

In the 20th century, I would argue the biggest debate in America in terms of reproduction has been abortion. I believe in the 21st century, Edwards's discoveries will make the issue of designing our descendants — that is, trying to create children who are stronger, faster, live longer, that sort of thing — that's going to become the biggest issue in the first half of the 21st century."

Prenatal Testing

Key question for couples:To what extent does the use of prenatal testing preserve or destroy the tension that is critical to the gift?

Prenatal Testing

The routine use of prenatal testing in societies such as New Zealand and Australia which embrace abortion and see disability in largely negative terms is feeding into a notion of procreative responsibility that is increasingly at odds with Catholic teaching on the unconditional respect due to all human life.

Prenatal Testing

Prenatal testing, by definition, generates specific information about the child within, changing the status of that child from total ‘stranger’ to one who can be assessed and judged as worthy or unworthy of life. That is to say, it is bringing about a greater focus on the outcome or the end-product, something that is inimical to a Gift-based paradigm.

The child as a product of human preference

When parents seek to influence the outcome of a pregnancy (using technology such as prenatal testing combined with either PGD or abortion) so as to guarantee their desire for a certain (healthy) child, it can be postulated that they are motivated by a fear that the gift of the child they seek may offer them less than they want. Now a different dynamic is present – one that seeks to ensure a strict equivalence between parental desire and what is received through the intentional use of means that control the outcome of the process of conception and birth.

Down syndrome

The statistics which show that upwards of 90% of children diagnosed prenatally with genetic conditions (such as Down syndrome) are aborted reveal the real potential that prenatal testing has to destroy human solidarity. See, for example, J. Bristow "Down’s Syndrome, Live Births, and Statistics," Abortion Review (2008), http://www.abortionreview.org/index.php/site/article/452/ (accessed March 16, 2012).

Prenatal Testing

In a society where, increasingly, a refusal to use prenatal testing is viewed as irresponsible precisely because it is leaving things to chance, a gift-based paradigm reframes chance; it emerges as a positive element. Upholding chance helps to ensure that children appear as genuine gifts rather than ‘objects’ subject to the needs of others.

Prenatal testing presents a potential risk because it introduces a degree of calculation into conceiving a new human life – one that presents a threat to the responsible transmission of human life

Routinisation of Prenatal Testing

• Couples need to justify why they do not want to use it • Couples report significant pressure to have a

termination of their pregnancy when the results reveal some sort of ‘abnormality.

• The presence of coercion is at odds with the freedom that lies at the heart of genuine giving.

Prenatal Testing and Catholic teaching

Prenatal testing is morally licit in certain conditions - it is permissible provided the parents have been adequately informed and given consent and if the methods employed safeguard the life and integrity of the embryo and the mother, without subjecting them to disproportionate risks.

But this diagnosis is gravely opposed to the moral law when it is done with the thought of possibly inducing an abortion depending upon the results: a diagnosis which shows the existence of a malformation or a hereditary illness must not be the equivalent of a death-sentence.

Prenatal Testing and the child as Gift

It is also possible that a couple’s motivation for ‘knowing’ the health status of their child may be to assist them to prepare for whatever outcome may eventuate. In this case the use of prenatal testing is properly described as both disinterested and self-interested. Even while it is conceded that the unborn child’s status as a stranger no longer applies, prenatal testing carried out for the sake of the child does not destroy the process of conception and birth as an act of genuine giving and receiving. Critically it serves to uphold the child’s experience of its contingency.

Prenatal Testing and AbortionWhile parents who use prenatal testing with abortion in mind may still speak of, and in some sense still experience, their (healthy) child as a gift, strictly speaking, having compromised the tension that is critical to the gift, what takes place is a transaction that, because it is about predictability and guarantees, is indicative of a production paradigm.

ConclusionPrenatal testing is capable of moving childbirth from a Gift-based economy into a market-based one; the conception of a child of the human kind is rapidly being replaced by the conception of a particular kind of human child. The manner in which some parents are willing to ‘dispose’ of certain children is evidence of a paradigm other than ‘Gift’ at work; a paradigm in which children are chosen rather than received in the manner of a gift – a paradigm synonymous with a type of ‘conditional’ commitment.

Conclusion

Whereas in earlier times the ‘absence’ of the child throughout the pregnancy was not contestable, and therefore, humanly speaking, was an amoral fact, the ready availability of prenatal testing means parents are now required to actively choose to keep the conception and development of their unborn child within the particular moral boundaries previously afforded by their status as a ‘stranger’; boundaries that ensured their conception and development occurred within a Gift-based paradigm.

Conclusion

Given the pressure on couples to avail themselves of prenatal testing, and given the repercussions of having a child with a disability or serious genetic condition in an era characterised by a ‘deficit’ model of disability and an ever-increasing need to rationalise health care and social welfare expenditure, the decision not to use testing or screening and/or the decision not to terminate a pregnancy will demand an ever increasing level of moral courage from those committed to protecting the transmission of human life as an act of genuine giving and receiving. Indeed, it is likely to require a degree of courage that is nothing short of heroic.

The Nathaniel Centre /The NZ Catholic Bioethics Centreadministrator@nathaniel.org.nzwww.nathaniel.org.nz

“There is a mystery and beauty to every life – as imperfect as we all are. There is an adventure that unfolds when we let life happen. It may be short or long. It’s always challenging, but always a gift. And we must resist the urge to try to completely control it. The fact that you can’t predict life’s wonders and surprises is one of the things that makes it so worth living.”Matt – Fallible Blogma - http://fallibleblogma.com/