Issue Three

Making decisions about the use of biotechnologies has become increasingly complex. The speed of technological development is tending to overwhelm our moral and ethical decision making.

In biotechnology many boundaries between issues have either disappeared or are in the process of doing so. This process has altered ethical perspectives in society and raised new ethical and moral questions. For example, five years ago ethical, moral and scientific agreement was almost universal in its opposition to the cloning of human embryos. There was little apparent benefit in such cloning and a widespread repugnance to cloning. Recently, the cloning of embryos has become an integral part of stem cell research and offers potential benefits in the treatment of a number of medical conditions. With the prospect of these therapeutic benefits there is no longer universal agreement that cloning of human embryos should be banned.

Stem cells derived from embryos now offer the opportunity to treat adult–onset diseases, such as Alzheimer’s and Parkinson’s disease, thereby linking the care of adults with the creation and use of embryos. The use of assisted reproductive technology has created thousands of so called “spare embryos, the storage and use of which pose serious moral dilemmas.   The use of these embryos in stem cell research is considered by some to be a way out of this dilemma. In the United States of America these embryos are now being put up for adoption.   It is argued that this is preferable to their destruction, their use in research, or their use as a source of stem cells. There is a growing realisation in the United States of America that the framing of adoption legislation will need to take into account the adoption of embryos. Similarly, in New Zealand it is becoming apparent that new adoption legislation must take account of the use of surrogacy.

Responding to these issues on a one by one basis can obscure the links between them and therefore the possibilities for identification of the key ethical and moral issues underlying the use of biotechnology. How can the Catholic Church respond in a manner, which assists society to positively address these issues? The insight of Cardinal Joseph Bernardin provides guidance, “the Church’s social policy role is at least as important in defining key questions as in deciding key questions.”

Identification and articulation of key moral and ethical issues is a first step. This process must take into account the linkages between the issues if we are to achieve a consistent and comprehensive ethical and moral response. For example, the status of the embryo is fundamental to any discussion about human cloning, the use of embryonic stem cells for research and the adoption of “spare embryos”.

The use of in vitro fertilisation, genetic testing, genetic modification and cloning, have increased our ability to select the characteristics of human beings as well as giving power as to whether or not they come into existence. We now have a power over human diversity, which potentially allows for the shaping of future generations in unforeseen ways.   In exploring the possibilities of biotechnology there is an ever-present danger of losing our way, of taking ourselves and future generations into territory or an environment which is fundamentally harmful to human life.   The irony is that we are most likely to do this as we search for ways of sustaining life, relieving suffering and improving our quality of life.

Biotechnology deals with our biology, and constantly risks disconnecting the physical aspects of our human nature from the non-physical and spiritual, reducing what is holistic in our nature to a single focus on what can be achieved physically. This disconnection has had to be faced in end of life care. The overuse of technology began to dominate the end of life with the processes of growth and healing, natural to the end of life, being subjugated to the technological push to prolong life. The rise of the hospice movement and the development of palliative care has helped to restore this balance in the care of the dying. Traditionally Western society has struggled with death as the ultimate limit, blurring the boundary between extending a life and prolonging a death.

At the end of life there is now a greater acceptance of limits in the use of technology, and greater appreciation of the fact that these limits are often found in the non-physical aspects of our being. We are much more than our biology, and we suffer when due recognition is not given to the spiritual, psychological, emotional and social aspects of our human nature. That understanding is a fundamental tenet of Catholic healthcare. In working with Catholic aged care facilities I have been privileged to be involved with people whose understanding of the holistic needs of those they care for is profoundly intuitive and well-grounded. Their approach and that of the hospice movement offer models, which contain the seeds of resolution for the complex problems emerging in the use of biotechnology.

Recognition that there is a natural balance between the different aspects of our human nature provides us with a starting point in discussing the limits of biotechnological intervention involving the beginning of life. The glittering possibilities offered by biotechnology have not yet been tempered by a close examination of their effects on other aspects of our human nature, which, at the end of life, has clearly demonstrated that use of biotechnology alone is not sufficient in the provision of holistic care.

There are many key ethical and moral questions to be answered, but the over-arching question is simply “Where are the limits to the use of biotechnology?” The linkages emerging between issues such as cloning, stem cell therapy, genetic modification, genetic testing, the creation and use of embryos, surrogacy, and adoption are leading us into deeper questions about individual identity, parenthood, families, human equality and the rights of future generations. We are developing new powers to create and alter human life, to determine who comes into existence and by what means. There is the concomitant possibility that in the use of these powers to address the immediate needs of individuals, we may, in the long term, create an environment that does not nurture life in its fullest and most holistic sense.

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2001

We live in a time of increasing complexity, some would even say "chaos."   Quantum technological advances are for the first time enabling us to envisage such possibilities as human cloning and designer organs, possibilities hitherto only dreamed of.   In the light of these developments we are confronting questions and challenges never before faced by the human race.   Yet, somewhat paradoxically, it is my perception that many people remain very certain about their judgements of what is right and wrong.   Why is this?

My own observations relating to this question have led me to a further conclusion; that in very many cases people seem to arrive at their convictions only as an activity of personal judgement based on limited information - or misinformation as the case may be.   In other words, consistent with the often quoted phrase, "Who can be so arrogant as to tell others that they are right or wrong?" it seems that no other standard of rightness or wrongness is allowed or needed than the standard of private choice.   Some would say that this is what a) makes the process of decision making such a relatively straight forward affair and b) explains the certainty with which many people are able to express their opinions.   In the words of John Kavanaugh: "The very fact that a man or woman makes a choice serves to defend its moral rightness." [i]  

Characteristic of such an approach to moral decision making is the fact that ultimately we are left with only subjectivity and subjectivism - the idea that the 'right' and 'good' are finally determined by each of us individually according to how we feel!   Furthermore, this approach embodies a certain - and I think incomplete - notion of conscience as being fundamentally about the assertion of individual human autonomy over and against the "tyranny" of authority in any form, be that Church or other.   The popular and powerful advertising slogan from Nike; "Just do it!" seems to me to sum up well this particular approach to moral decision making.   It is an approach that has come to be labelled by many as "relativism", an approach that rests on the assumption that there are few, if indeed any, "objective" truths or standards against which we can measure our behaviour and choices. [ii]   What then is the measure of a person's behaviour?   It is whatever we happen to value at the time.   This implies an understanding of "values" being something we attach in the manner of a price tag.   Value is ultimately a function of each individual.   We "inject" as it were value into those things we feel strongly about or cherish.   Things, persons, actions, we are led to believe, have no value outside of our subjective states or our wish to use them to satisfy particular wants of ours.  

What exactly does a Catholic-Christian approach to moral decision making have to offer us in the face of relativism?   And closely tied in with that question: What is it that is fundamental to a Catholic-Christian approach to moral decision making?   These are questions that I now offer some reflections on.  

The first point I wish to make is that the Catholic-Christian tradition has always asserted that the world we live in, our bodies, and significant human actions are not simply devoid of meaning and value until shaped by human freedom or particular human wants.   Rather, a Catholic-Christian approach insists that certain things have an inherent or intrinsic (built-in) meaning and that being human demands specific forms, specific ways of acting and behaving.   In other words, there are standards of behaviour proper to our dignity as persons, standards derivable from the nature of things as they are.   Ultimately, it means that we ourselves are able to discern a rational basis for appropriate human behaviour.   We are then able to conclude, by a process of reflection and discernment that certain behaviours are consistent with the way we have been created and lead us to realise more fully our potential, while other behaviours are undermining of our true dignity.

Of course, it is one thing to assert such a belief and it is another to be able to always discern easily what the particular standards of behaviour are.   Yet, even in the face of difficulty, the Catholic-Christian tradition has never shied away from this most fundamental belief.   To do so would be to subscribe to the notion that reality is no more or no less than what we make it to be.   Or, alternatively, we would have to subscribe to a system of morality based on the assumption that we were totally incapable of deciding for ourselves what was good or right.   We would, in that case, be left only with external standards, norms or laws imposed on us from without.   Moral decision making would then consist only of "conforming" our will to the rule of an external authority.   Again, the Catholic-Christian tradition has consistently rejected the adequacy of such an approach.   In the words of the Second Vatican Council: "'The dignity of the human person is a concern of which people of our time are becoming increasingly aware.'   Hence the insistent demand that people be permitted to 'enjoy the use of their own responsible judgement and freedom, and decide on their actions on grounds of duty and conscience, without external pressure or coercion.'" [iii]  

A personal anecdote can serve as a helpful illustration.   Three years ago we moved to Wellington and purchased the house we currently live in.   The day we shifted in was hectic as we unpacked and frantically sought to create some order out of the chaos.   Thankfully, early on in the day, our young son Daniel (then five) discovered his soccer ball and was happy to go out for a kick around - away from under our feet!   Some time later he returned with a very disgruntled look on his face, scratches on his legs, and worst of all some deep scratches on his new ball.   "Dad," he complained, "there is a huge prickle bush out there and it's in the way and I need you to pull it out."   I responded that I would duly look into it.   Later that day I went in search of the rogue "prickle bush" finding only a (by now) battered looking and solitary rose bush.   Indeed the only rose bush on the whole property, as Kerry my (rose loving) wife had already pointed out, and because of that, for her extremely precious - an endangered species needing to be accorded full protection.

What does this story teach us?   For Daniel the rose bush had no value outside of his subjective state.   He failed - and probably still fails - to recognise its inherent worth.   His wish was simply to kick a ball.   Because the bush was stopping him from doing that it had absolutely no value for him, and his strong inclination was to get rid of it.   This highlights an important fact.   The moral decisions we make are above all a function of what we see.   Daniel and Kerry both looked at the same "objective reality" (a rose bush) but each saw something quite different.   This in turn led them to want to act in quite different ways - one to exterminate, the other to protect!   Thus the first task in moral decision making is to check out what we see, to clarify our vision, to look closely at the way we view the world - our worldview.   Acting in the "right" way depends on "seeing aright."   We act according to the way we see things.   And the world does not offer itself to us with unmistakable clarity, as my story shows.   Another way of putting this is to say that moral decision making is essentially descriptive and only secondarily, though necessarily, about what to do or not to do, i.e. only secondarily prescriptive or proscriptive.  

The worldview each of us subscribes to has been, and continues to be, shaped by significant others around us, by the various communities of influence which we constantly move in and out of.   Every community, whether it be our family of origin, the media, a sports club, church or service group has its own "culture."   What I mean by culture in this context is a certain hierarchy or ordering of values, a hierarchy that is constructed around what is seen as being most important and which will reflect certain attitudes about life and what it is to be fulfilled as a human person.   Darragh puts it well: "All of our decisions and stands involve, whether consciously or unconsciously, a set of values and attitudes regarding what is most important. [iv]   By definition then, to speak of a Christian worldview is to speak of viewing the world in a certain way - literally to view the world through the eyes of Christ and to embrace a set of attitudes and values that mirror those of Jesus Christ.   This creates the expectation that those claiming to work out of a Christian worldview will have been shaped to a significant degree by a Christian community of influence.  

It is herein that I believe the distinctiveness of a Christian approach to moral decision making lies.   We strive to see the world in a particular way, in a way that reflects a particular set of values and attitudes chosen and ordered from the priorities operative in the life of Jesus Christ.   These values and attitudes have been captured for us in numerous "sources" such as the scriptures and the living transmission of our faith down through the centuries.   In addition we believe that the spirit of Jesus, the Holy Spirit, lives on continues to reveal the will of God in other ways including our own experience and the wisdom and knowledge available through contemporary sciences.  

To see the world through the eyes of Christ is by definition to reject the relativistic approach to moral decision making that I have referred to above.   It is to take a partisan approach, and involves us drawing lines in the sand, so to speak.   It implies that we will uphold certain principles and embrace a specific set of attitudes and values.   It implies that we will prioritise certain things over others and recognise that there exist limits that proscribe our behaviour.  

Accepting that moral decision making is first and foremost about what we see then, from a Christian perspective, the first and most urgent task is to allow ourselves to be formed and informed by the values and attitudes of Jesus Christ.   This is not necessarily an easy task.   For a start we are not always clear about our own worldviews.   We can so easily ignore the fact that most of our moral convictions are like the air we breathe - we never notice them, yet they influence us to see things in certain ways only and to describe the world in certain ways only.  

Also, we are only too aware that Christians can have diverging, even opposing opinions with respect to particular issues and to what is God's will or viewpoint.   It is all too easy for us to claim God's authority for a particular moral stance or decision, only to later realise the error of our ways.   Christian history is full of such examples.   In addition, we recognise that the Christian worldview exists in a "tournament of worldviews" many of them offering different priorities based on quite different pictures of what it is to be a fulfilled person.   The reality is that we are often more influenced by these alternative worldviews than we might admit.   For example, as a result of living in a "consumerist" society we are inclined to interpret some of the more challenging biblical stories relating to social justice and equity in a way that is least disruptive to our own comfortable lifestyles.   Moreover we are then quite adept at justifying our own particular interpretations.

To conclude. I have argued that the first and most urgent task in moral decision making is to reflect critically on our worldview.   Indeed I believe that an understanding of worldviews provides a valuable insight into why parties debating moral issues so often seem to make little or no progress.   It is not that they are seeing different things in the same world.   Rather, they are seeing different worlds.   I have rejected the adequacy of a relativistic approach to decision making that operates from the assumption that value is something able to be 'attached' like a price tag according to subjective desires and wants.   And while I have not attempted to even start defining the exact nature of it, I have argued for the existence of a Catholic-Christian worldview that reflects a partisan set of values and attitudes, namely those of Jesus Christ.   Obviously, this still leaves us with a great number of unanswered questions, questions such as:

1)     What are the specific values and attitudes that are characteristic of
         Jesus Christ and a Christian worldview?
2)      How can we ensure that we allow ourselves to be shaped by the
         values and attitudes of Jesus Christ?
3)      How in practice does a Christian worldview assist us with the hard
         questions and decisions around issues such as cloning?

These are questions for another time.   Yet there is an important lesson to be learnt.   When it comes to debating the hard moral questions we must resist the overwhelming temptation to charge in with sleeves rolled up ready to fight tooth and nail for what we 'know' is right and wrong.   We need to discipline ourselves and habitually make it the first step to clarify the worldview out of which we, and others, are operating.   Then, not only will we be able to better understand others and ourselves, we will also make significantly more progress in advancing the issue.   If on the one hand that means we will be a little more tentative in claiming a particular stance as being representative of God's view, I also believe that when we do finally forward such a claim, it will be with more certainty, clarity and pastoral sensitivity.
_______________

[i] Kavanaugh, J. (1997, January 18). A Daunting Task. America.
[ii] Pope John Paul II is among many who have written in a concerned way about the phenomenon of relativism. "To the affirmation that one has a duty to follow one's conscience is unduly added the affirmation that one's moral judgement is true merely by the fact that it has its origin in the conscience.   But in this way the inescapable claims of truth disappear, yielding their place to a criterion of sincerity, authenticity and 'being at peace with oneself' so much so that some have come to adopt a radically subjectivistic conception of moral judgement ... There is a tendency to grant to the individual conscience the prerogative of independently determining the criteria of good and evil and then acting accordingly. Such an outlook is quite congenial to an individualist ethic, wherein each individual is faced with his own truth, different from the truth of others."   See John Paul II. (1993). Veritatis Splendor: On Certain Fundamental Questions of the Church's Moral Teaching. Homebush, NSW: St Pauls, #32.
[iii] Declaration on Religious Freedom Dignitatis Humanae, #1, and quoted in Veritatis Splendor #131. See also Veritatis Splendor #15, where John Paul II speaks of the need to interiorise the demands of the commandments, and sees this as the way in which Jesus himself brought God's commandments to fulfilment.
[iv] Darragh, N. (1995). Doing Theology Ourselves. Auckland: Accent Publications. , 13.
_______________

John Kleinsman is on the Staff of the Wellington Catholic Education Centre

©
2001

The lack of legislation in New Zealand relating to human cloning has been highlighted recently by the announcement that a team of scientists from Italy, Israel and the United States is seeking to use cloning to create human embryos, as a means of assisting infertile couples to have children.

In the minds of many people the word “cloning” generally conjures up pictures of identical human beings, created without using normal reproductive processes. However cloning is more complex than this popular understanding. The term “cloning” can be applied to the copying of pieces of DNA, forms of asexual reproduction in plants, the development of a line of cells or a tissue from a single cell, sub-dividing an embryo in the early stages of development to form two embryos (embryo splitting), as well as to the cell nuclear replacement technique used to create the first cloned sheep, Dolly.

With the development of stem cell research over the last few years, the terms reproductive cloning and therapeutic cloning have emerged. Both processes begin in the same way, with the creation of a human embryo by cell nuclear replacement (cloning). This is done by removing the genetic material from a human egg or an already existing embryo (usually a “spare” embryo from infertility treatment) and replacing it with the genetic material taken from a cell of another person. This creates an embryo which is genetically the same as that person, and which is then stimulated to begin cell division. The purpose for which the cloned embryo has been created determines whether the cloning is described as reproductive or therapeutic.

If the embryo is placed in the uterus of a woman and implants, it may potentially become a foetus and then a child. This is referred to as reproductive cloning, or cloning for reproductive purposes. Many countries have legislation, which bans cloning for this purpose, and there is widespread opposition to it among scientists. Two bills on assisted human reproduction currently at the Select Committee stage in the New Zealand Parliament effectively ban cloning for reproductive purposes.

In therapeutic cloning the cloned embryo is allowed to grow into a ball of cells, but is not placed in the uterus of a woman. Stem cells are removed from the cloned embryo, destroying it. Stem cells are not specialised to form particular types of tissue and can be influenced to grow into tissues to replace damaged or diseased tissue, for example, in people with conditions such as Parkinson’s disease and Alzheimer’s disease, or in patients suffering from burns. Because the stem cells giving rise to the new tissue can come from a cloned embryo with the same genetic makeup as the patient, scientists expect that the problems of rejection usually associated with introducing new tissue into the body will not occur.

There are many potential applications of stem cell technology. It certainly offers startling new possibilities in medical treatment, which is why the cloning involved is often described as therapeutic cloning. However the cloning process is the same in reproductive and therapeutic cloning, and in both cases results in the creation of a human embryo with a genetic makeup identical to that of another person. In reproductive cloning the embryo would be allowed to develop into a child, whereas in therapeutic cloning the embryo is destroyed by the removal of stem cells.

Catholic teaching opposes reproductive cloning for a number of serious reasons. It offends against the personal and unique identity given to each individual by God. It denies an individual the right to have two genetic parents, and confuses family relationships. There are also serious questions concerning our right to so fundamentally alter the manner in which we come into existence, and the effects these actions could have on future generations and on individuals produced by cloning.

The Catholic Church is not alone in opposing cloning for reproductive purposes. In 1997 the European Parliament passed a resolution on cloning which stated:

“…the cloning of human beings, whether experimentally, in the context of fertility treatment, pre-implantation diagnosis, tissue transplantation or for any other purposes whatsoever cannot under any circumstances be justified or tolerated by any society, because it is a serious violation of human rights, and contrary to the principle of equality of human beings as it permits a eugenic and racist selection of the human race, it offends against human dignity, and it requires experimentation on humans…”
- European Parliament; Resolution on Cloning 12 March 1997

In therapeutic cloning the same moral objections exist as in reproductive cloning, but there are also serious issues associated with the destruction of an embryo when stem cells are removed from it. The cloned embryo can be created using a human egg, or by using an already existing embryo. In the latter case two embryos are destroyed.

From the moment of its creation the living human embryo is human life with an individual identity. At conception it begins its own continuous development, and cannot be considered at any point to be merely a simple mass of cells. The embryo has its own right to life, which cannot be sacrificed even for the good end of therapeutic benefit to other persons.

Some countries such as Spain and France have banned cloning for both reproductive and therapeutic purposes. Italy is considering allowing the use of stem cells from aborted foetuses, umbilical cords and adults to be used in stem cell research, but not cloned embryos. Allowing cloning for therapeutic purposes but banning cloning for reproductive purposes, as has been done in the United Kingdom, is one possibility which will be considered in New Zealand. The United Kingdom legislation allows human embryos to be created by cloning, but forbids their implantation in the uterus of a woman and requires their destruction in stem cell research. Legislation which follows this approach is not legislation against cloning, but against allowing cloned human beings to survive, as highlighted by The Pontifical Academy for Life in its “Reflections on Cloning”:

“A prohibition on cloning which would be limited to preventing the birth of a cloned child, but which would still permit the cloning of an embryo-foetus, would involve experimentation on embryos and foetuses and would require their suppression before birth – a cruel, exploitative way of treating human beings.”

The Pontifical Academy for Life writers also point out that a cloned embryo is human life, and that destroying it is an immoral act. Creating human embryos to be of use to other human beings, and enacting legislation which requires the destruction of human life are actions which raise serious questions of ethics and justice should they be considered in New Zealand.

Anne Dickinson is the Director of Caritas Aotearoa New Zealand and a member of the Panel of Advisers for The Nathaniel Centre.

©
2001

“The voluntary consent of the human subject is absolutely essential”. In the practice of human experimentation, this is the first of the basic principles to satisfy moral, ethical and legal concepts, as laid down in the Nuremburg Code 1947. The Code is the concluding statement of the judgment in the trial of the Nazi doctors who were accused of crimes against humanity by conducting criminal scientific and medical experiments on concentration camp prisoners.   The Nuremburg Code has become part of international law and it serves as the basis for many formulations of the ethics of research with human subjects.

There is little disagreement that the experiments that the Nazi doctors carried out were inhumane.   Probably because their experiments were so repugnant and so alien to medical research and treatment carried out in New Zealand, there was a prevailing thought that such things would and could not happen here.   Documents such as the Nuremburg Code and the 1964 Declaration of Helsinki were seen as being worthy but of peripheral importance.

The “Unfortunate Experiment” at National Women’s Hospital and the resulting Commission of Inquiry conducted by Judge Silvia Cartwright shook New Zealanders’ complacency and was a reminder that paternalism is not an acceptable replacement for informed consent in human treatment and experimentation.   Since the Cartwright Report was released in 1988 and the Code of Rights for Health and Disability Consumers came into effect on 1 July 1996, informed consent in both treatment and research is a term that has become widely used in New Zealand.

It is not however a term that is necessarily widely understood or even accepted by all. In its simplest terms, it is a process that provides an individual with the information and understanding that is needed to choose to have or not to have treatment or undergo a procedure, free from coercion.

It is often claimed, particularly by members of the medical profession that informed consent is not possible as a health professional cannot impart complete understanding to a consumer. This is probably true but it is also true that levels of understanding in any communication will be neither complete nor accurate.   For most people, imperfect knowledge allows them to make rational decisions and live their lives. The issue rather should be not one of complete understanding but rather one of adequate knowledge for the purpose at hand [i] .

Some people argue that informed consent implies that once having heard and understood the information, an individual will agree with or opt for treatment.   For this reason,   the term “informed choice and consent”   may be preferred   as it implies that informed choice is a pre-condition of informed consent. This principle of informed choice rather than that of informed consent was argued strongly by the Interchurch Commission presenters at the Royal Commission on Genetic Modification. They rejected the assumption that many of the people who are against genetic engineering oppose it because they do not understand it. Their argument was that understanding may result in consent but equally, it may result in rejection.   

The purpose of the informed choice and consent 
Health care providers have a legal obligation under the New Zealand Bill of Rights Act 1990 and The Code of Health and Disability Services Consumers’ Rights 1996 ,   to disclose information to consumers of their services.   The exercise of obtaining informed consent therefore provides legal protection for health providers.   Informed consent is also about safety of individuals as it gives them greater protection from exploitation or manipulation in therapeutic treatment or research.   Most importantly however, it is about showing respect for the self determination and personal autonomy of each human being and their right to individual beliefs, desires, values and goals.

Personal autonomy is described as “rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice, such as inadequate understanding” [ii] .   Max Charlesworth describes it as the “condition for any human act to have moral value….   Acts of affection, courage and creativity are distinctively human acts only if they are autonomously done” [iii] .

Elements of informed choice and consent
As a concept, informed choice and consent is easier to understand if its elements and their applications are explained.

1.       Adequate information which is accurate, objective, relevant and
          culturally appropriate.   This should broadly include:

• the nature and likely effectiveness of the proposed treatment or procedure
• the risks which may arise
• the likelihood of risk and consequences if they eventuate
• other options, including the right to receive no treatment
• the right to a second opinion

This does not mean, as is sometimes assumed, that a health professional must pass on to a consumer everything there is to know about a condition or proposed treatment. The Code of Health and Disability Services Consumers’ Rights 1996 states: “Every consumer has the right to the information that a reasonable consumer, in that consumer’s circumstances, would expect to receive”. This is the so-called rights-based approach in that the consumer has the right to know what treatment entails in order to make a reasoned choice and thus give valid consent. This approach also recognises that some consumers will not want to receive information. In these cases, the treatment provider should not inflict unwanted or unsought information on the consumer but make a genuine and reasonable attempt to find out the consumer’s real wishes.

The health professional must pass on information that is “material” to the consumer making the decision.   “Materiality” is a legal concept and in Rogers v Whitaker (Australia 1992), a risk is material if:

“In the circumstances of a particular case, a reasonable person in the patient’s position, if warned of the risk, would be likely to attach significance to it, or if the practitioner is or should be aware that the particular patient, if warned of the risk, would be likely to attach significance to it”

An example of this might be an ear operation that involves a very slight risk of damage to the lingual nerve, the nerve that is crucial for the sensation of taste. As the risk is so small, the Ear Nose and Throat Surgeon would probably not usually warn every consumer of it. However, if the consumer were a cook where the sense of taste is very important, that risk becomes “material” and should certainly be passed on.

2.       Competence – The Code of Rights states that “Every person is presumed to be competent to make an informed choice and give informed consent unless there are reasonable grounds for believing the consumer is not competent”.

Treating an individual as incompetent removes their autonomy so it is preferable to try to enhance or support the decision-making capacity of those who appear to have limited ability to give consent.   It is important to determine the degree of capability.   Children for instance will vary in capacity, according to their age and level of maturity.   People with mental disability also vary enormously, from those who obviously lack decision-making capacity, to those who have the capacity to make many decisions for themselves. Every effort should be made to find indicators to how capable the person is, including their level of communication with family/caregivers and their ability to understand information and weigh up alternatives [iv] .

If a person is unable to give consent, then treatment will usually be given or withheld on the basis of “substituted judgement” or “the best interests of the person”.   Substituted judgement assumes that the individual has the right to his or her autonomy respected but is currently unable to exercise that autonomy in decision making.   The question is then asked, “What decision would the person have made if they had been competent to make it?”   The “best interests” standard protects another’s wellbeing by assessing risks and benefits of various treatments and alternatives to treatment, by considering pain and suffering, and by evaluating restoration or loss of functioning. [v]   

3.    Absence of coercion – the person should act voluntarily and not be coerced or have undue pressure or influence applied by the providers or others.

Consent must be given freely and voluntarily. There must be no compulsion, force, coercion or deception.   Undue pressure may be insidious or subtle, experimentation such as a person’s fear of not being properly looked after if they turn down a particular treatment. They may also fear being criticised or being thought “a bad or difficult patient”.   It is better that consent is gained gradually or in stages so that the consumer has time to think about the information, to discuss it with others and be away from the environment where the provider is in a position of power.

Conclusion
In Catholic teaching, every person is created in the image of God and redeemed by Jesus Christ. He or she is therefore uniquely valued and worthy of respect as a member of the human family.   The dignity of each human being grants them inalienable rights and informed consent is a practical and effective recognition and expression of these. In the health sector, this means that health professionals must recognise the inviolable limits that are created by respect for the person and by the protection of the person’s right to live a life truly worthy of a human being.

Sharron Cole is Chair of the Wellington Ethics Committee and the ACC Medical Misadventure Advisory Committee. She is also a member of the Medical practitioners’ Disciplinary Committee.

©
2001

[i] Gorowvitz,Samuel   Doctors’ Dilemmas. New York: Macmillan Publishing, 1982, p. 43

[ii] Beauchamp, Tom, & Childress, James Principles of Biomedical Ethics, New York: Oxford University Press, 1994, p.121

[iii] Charlesworth,Max   “Personal Autonomy” in Bioethics Outlook, vol 5, no 4, Dec 94, p5

[iv] Basterra, Francisco   Bioethics   UK: St Pauls 1994, p.243

[v] Beauchamp, Tom, & Childress, p. 178

"Clinical ethics is a practical discipline that provides a structured approach to decision making that can assist physicians and family members to identify, analyse, and resolve ethical issues in clinical medicine.”
                                                                           Jonsen, Siegler & Winslade

Healthcare professionals frequently contact The Nathaniel Centre asking for advice on a particular issue in clinical practice, or an issue concerning treatment options for a family member. We thought it would be helpful, therefore, to provide a brief outline of a model to assist these readers understanding of some of the ethical issues in healthcare practice. This particular model comes from Jonsen, Siegler & Winslade’s book, “Clinical Ethics”.  

Ethical issues, which are an inherent part of medical practice, are embedded within a particular context. That context can be broken up and analysed for the purposes of discussion and clarification and in order to achieve a reasonable and practical process of consensus, and, if possible, resolution. An appreciation of the various elements within the complexity of an ethical issue enables the healthcare professional to be more effective in this process of resolution. The clinical ethics provides a structured approach to decision making and assists the healthcare professional and those they care for to identify, analyse and resolve ethical issues. The use of this or a similar clinical ethics model is not a ready-made formula providing answers to complex questions but rather is meant to assist the clinician working with family members and other healthcare professionals in reflecting on the various layers in a specific ethical issue. Because ethical issues centre on competing goods there are times when a particular issue cannot be resolved even though a point of consensus may still be reached.

Jonsen, Siegler and Winslade, describe four essential features of the clinical ethics model which highlight and help to identify and understand a particular ethical issue - the Medical Indications; the Patient Preferences; Quality of Life Issues, and Contextual Features. While all of these features are relevant to every case, often a specific feature will be especially significant and provide the key to the process of understanding.

Medical Indications – the content of the clinical discussion
The starting point for any ethical discussion is to focus on the patient’s background or narrative. Medical indications help to establish the content and parameters of the discussion and greatly assist in the process of resolution once there is a clear understanding by all parties of what these indications are. Helpful questions to ask in order to establish an adequate and relevant history include: What are the clinical facts?   What are the probable outcomes of treatment? And, what are the possible benefits, together with, the possible burdens of the specific interventions?

Patient Preferences – Values, Goals, Desires
The patient’s history and medical indications alert us to the patient’s preferences, that is, his or her values, goals and desires, and his or her personal assessment of the benefits and burdens of any proposed treatments or interventions. Questions that help to establish a clear understanding of a patient’s preferences include: What are the patient’s goals? What does the patient want? Has the patient been provided sufficient information? Does the patient understand this information? If the patient is not able to communicate his or her preferences then who has the authority to act on his or her behalf?

The usual means of establishing a patient’s preferences is through the process of free and informed consent, which shows respect for the autonomy and innate dignity of the patient. [In the Catholic moral tradition this principle is a corollary of the principle of a well-formed conscience.] As a process it should be initiated early and is not achieved in an instant or in a single conversation. Neither can it be initiated when a case has unravelled. Frequently unresolved ethical issues in clinical practice reveal a lack of due process in obtaining informed consent. [This issue of The Nathaniel Report contains a more complete article on “Informed Consent”]

Quality of Life Issues – the object of any medical intervention: To restore, maintain or improve the quality of a patient’s life 
Illness and disease have the potential to reduce an individual’s quality of life. The object of any medical intervention is to restore, maintain or improve the quality of a patient’s life. Particular goals of care, such as adequate pain relief and physiotherapy, are illustrations of improving quality of life. Nevertheless, the use of the concept of quality of life in clinical ethics is open to considerable bias and prejudice and must therefore be employed with great care.   Jonsen, Siegler and Winslade distinguish between two uses of the phrase “quality of life”. The “subjective satisfaction expressed or experienced by an individual in his or her physical, mental and social situation”; and, “the subjective evaluation by an onlooker of another’s subjective experiences of personal life.” They rightly caution the clinician or observer in applying quality-of-life judgements in clinical decisions.

Contextual Features – the limits and features of a particular case
The context establishes the limits and conditions of a particular case. Every case is located in a larger context of variables. Patient care is simultaneously influenced, positively and negatively, by the constraints of the context. Contextual features include: Cultural values; personal narrative; legal and financial issues; the family context; social arrangements; institutional and spiritual issues.

Discussion/Resolution – Clinical ethics in practice. 
Claude Monet, one of the founders of Impressionist painting, has left some wonderful writing on his painting style. He once wrote, “The fragment gives insight into the whole, the total picture. The shadow brings insight to the light.” In examining a particular ethical issue, it is frequently the “fragment” that gives insight into the process of resolution and understanding because its significance has been overlooked. In examining a patient’s narrative or history, in careful listening to the patient’s preferences, quality of life and contextual features the significance of the “fragment” is re-established thereby opening the way for possible resolution and/or consensus.
 
The establishment of goals of care is, ideally speaking, an interdisciplinary process. Multiple teams, working in isolation, with their own specific focus, can complicate the process of resolution of an ethical issue. Given that fragmented care can in fact compound the particular issue at hand, frequently the use of the clinical ethics model in practice involves facilitates the reestablishment of good lines of communication and clear goals of care. In this process the ethicist acts as a facilitator for the good of the individuals concerned.

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2001

The Royal Commission on Genetic Modification has recently completed fourteen weeks of formal hearings, with some 330 “interested parties” having presented written submissions and appeared before the Commission. Public meetings, regional Hui and a meeting with young people been held and some 10,000 written submissions received from the general public. The Commission now has the substantial task of analysing what it has received, and determining the directions for New Zealand with respect to the use of genetic modification.

On 22 February 2001, Bishop Peter Cullinane, Father Michael McCabe and Anne Dickinson appeared before the Royal Commission to discuss the written submission made by the New Zealand Catholic Bishops’ Conference. Before answering questions from the Commission they presented the following oral submission.

Sir Thomas, members of the Commission

The debate about genetic modification is characterised by complexity, and that has been very evident in the written submissions of interested parties. Taken collectively, the submissions reveal much about human nature, because genetic modification and its applications are human activities.

In this debate aspects of our human nature appear at times to be in opposition. For example, the desire to explore our universe and use our creativity is as much part of our nature as our need for stability and predictability. The need to seek physical sustenance and support from our environment coexists with a deep psychological and spiritual need to live in harmony with the environment. Reason gives us the means of balancing these apparently competing needs, and it is the reasoned approach which often reveals that needs appear to be in opposition only when they are taken to extremes or there is a focus on one need to the exclusion of others. We are most likely to do harm when we focus on one need to the exclusion of others. For example, a focus on the economic benefits of genetic modification to the exclusion of other human values will impoverish rather than enrich us as a people; likewise, so will blanket opposition to genetic modification on the grounds that we are not wise enough to be trusted with its use.

The issues at the heart of the GM debate are issues about our own human nature, and they are not new issues. We have faced them many times before, as we have worked out ways to ensure that we can obtain the benefits of new knowledge while limiting or excluding potential harm. In our submission we stated that while we do not see the technology of genetic modification to be in conflict with ethical values, we are very aware that there are some uses of that technology which are unethical or unwise, or offensive to some people.

Many known uses of genetic modification have been tabled, with potential uses only being hinted at or simply unknown at this stage. While as a Commission you may make decisions about known uses of genetic modification, we consider it vital that you also put in place a means of ethically evaluating new uses as they arise in the future. We recognise the role the Environmental Risk Management Authority (ERMA) currently plays in evaluating environmental, health and safety aspects of uses of genetic modification. However we believe that needs to be complemented by a broader evaluation based on a framework of ethical principles. We have argued for such a framework in our submission and we would now like to briefly outline possible components of such a framework.

We do not need new ethical principles to evaluate uses of genetic modification. There are already fundamental and accepted ethical principles underpinning much of our legislation and the work of ethics bodies in New Zealand. They are powerful guides in thinking about the ethical dimensions of many diverse situations, including genetic modification.

The first of these ethical principles is that of non-maleficence – “first, do no harm”. Essentially this is a principle about safety. “First do no harm” involves more than ensuring physical or environmental safety. We believe that too much is being asked of the Hazardous Substances and New Organisms Act [HSNO] in its current form, because it does not provide a sufficient framework for balancing ethical, cultural and spiritual beliefs with scientific information. The case-by-case approach of the regulatory process needs to be guided by policy, which incorporates wider concerns and defines the boundaries in our use of genetic modification.

We are supportive of recommendations which recognize that applications of genetic modification lie along a continuum of risk. Low risk research activities of the type carried out safely in containment for the last twenty-five years are now routine, and do not need the same high level of regulatory and community scrutiny as new uses which have potentially irreversible effects.

There has been much said about the Precautionary Principle. We support the application of the principle to uses of genetic modification, in a form which recognises that human activities always involve some degree of risk, however slight. Understanding of the degree of risk is often a function of time, the risk increasing or decreasing with advances in knowledge. This is particularly so for certain milestone events in the use of genetic modification, for example, a first release of a Genetically Modified Organism [GMO] into the environment. For this type of use the competitive element of human nature needs to be tempered by the virtues of caution and patience. There are some complex and potentially irreversible uses of genetic modification which we simply don’t know enough about, and where there is the possibility of serious or irreversible damage the burden of proof should fall on those who wish to carry out the activities in question. There is wisdom in delaying these types of decisions for a period of time in order to carry out further research, not only into the science, but also into the ethical, cultural and economic aspects of the application.

The second fundamental principle to be included in an ethical framework is that of beneficence, the potential of an action to provide a good or a benefit. Those who will benefit from a particular genetic modification should be clearly identified, and their need for such benefit evaluated to ensure that it is not achieved at the expense of the well-being or benefit of others. We recognize the value to the community of economic benefit, but strongly believe that it should not be the key driver in decision-making. Improvement of the human condition, respect for our environment and other life forms, and less tangible and longer term benefits are all equally important considerations.

Evaluation of the potential of a particular genetic modification to do harm or provide benefit depends upon the acceptance by all of a third fundamental principle, that of veracity or truthfulness. Sound decisions depend upon the availability of information which is honest, unbiased and comprehensive. As we said in our submission, this debate has been characterised by polarization and the use of carefully selected information to support particular viewpoints. Truthfulness requires that all information be available and verifiable, and that research be open to all possibilities, rather than designed to support particular stances. Competitive advantage or personal philosophies are not reasons for obscuring truth, because there is too much at stake for all of us.

Our Western society is based on respect for individual freedom, which carries with it an acceptance of responsibility for one’s actions and for their contribution to the common good. These concepts are reflected in the principle of respect for autonomy, the fourth principle to be included in an ethical framework, respect for autonomy, acknowledges our right to our own choices, opinions, values, goals and freedom to act in a way which is respectful of others. An autonomous person makes choices after careful consideration of alternatives, which means that respect for autonomy must operate in tandem with the principle of veracity, or truthfulness. In the health field the provision of good information to patients as the basis for personal decisions has long been accepted. Likewise, the provision of neutral and non-judgemental information about the risks and benefits of genetic modification is a key component of respecting the autonomy of individuals. The labeling of foods with a GM component is an example of providing information that allows people informed choice.

The fine detail of how the principle of respect for autonomy is to be applied will be one of the most challenging aspects of developing an ethical framework. Labelling food is one of the simpler solutions – the growing of food and the modification or use of copies of human genes gives rise to more difficult issues. It is in this area of respect for autonomy that issues of concern to Māori need to be worked out, so that their spiritual beliefs are respected without imposing a veto on GM work within New Zealand. In relation to genetic modification the teasing out of respect for autonomy requires a commitment to dialogue, with a multi-disciplinary and multicultural approach being essential. Such a dialogue challenges all groups engaged in the debate to stand in the shoes of others, rather than simply dismissing perspectives which differ from their own.

A fifth principle, that of justice, must also be included in an ethical framework. Application of the principle of justice would bring into focus questions about the sharing of the benefits and risks of genetic modification, and issues about human rights. In this new context there is the possibility of starting afresh in seeking to make social justice a reality, taking account of the poor in our midst and remembering that, as a nation, we consume far more than our fair share of the earth’s resources. Our use of this new technology has the potential to exacerbate further the inequalities that subject many Third World countries to injustice and marginalisation. This is especially so if we use it in an exploitative way or to gain wealth for ourselves at the expense of others. As a nation, we can decide to use this technology, not only to benefit ourselves, but also to respond to the needs of the poor. In New Zealand we have a particular responsibility to provide leadership in the use of this technology to benefit or protect our Pacific neighbours. Is it too much to require that “the needs of the poor take priority over the desires of the rich” in determining how we will use genetic modification?

We noted in our submission that many of the issues in genetic modification have arisen from a non-Māori world and have their origins in a different cultural perspective. The Treaty of Waitangi requires respect for the “world view” of Māori, their spirituality, culture and traditions. We draw your attention to the Witness Brief of Dr Mere Roberts, presented on behalf of the Māori advisory group to ERMA, Nga Kaihautu Tikanga Taiao. Members of the group are highly-qualified in scientific disciplines. They identify a number of serious issues for Māori in the regulatory process, and state that they are concerned that until these issues are addressed and resolved, there would appear to be no circumstances available under the HSNO Act “within which Māori spiritual and cultural concerns will ever be considered of sufficient significance to lead to the decline of an application.” They consider that the Act in its present form is failing Māori, a statement that deserves serious attention. These issues may be better worked out within an ethical framework through the principle of respect for autonomy than on a case-by-case basis in a regulatory system.

To conclude, we believe that developing and applying a framework of ethical principles to uses of genetic modification is essential, but that it will be a challenging task. It will require dialogue across disciplines and between groups with strongly-held views. However it has the potential to bring about a deepening of the ethical wisdom needed to handle not just this scientific advance, but others yet to come.

If this debate could be described as having sides, a pro-GM lobby and an anti GM lobby, then we need to understand the value in both perspectives. The very focused innovation and creativity of science is balanced by the perspective of those who look at the impact of potential change on the less tangible aspects of our lives. This is not a matter of one side winning. It is about how we go forward together with a greater understanding of one another, and with the ability to make decisions for our common good.

1/4/2001

Cambridge Quarterly of Healthcare Ethics
This is the International Journal for Healthcare Ethics and Ethics Committees and it is the official journal of the International Bioethics Institute. Its scope is to explore both broad issues in healthcare and organisational concerns that arise in institutions where ethics committees work. To respond to the diverse needs of ethics committees’ members, the journal publishes articles devoted to medicine, law, philosophy, economics, research, theology, education, and behavioural and social sciences, with a focus on practical application in committee settings. 

As its title suggests, it is published four times a year. Each volume has a special section on a particular issue.   Recent issues have included “In pursuit of perfect people: the ethics of enhancement” and “Rights and strikes in healthcare”. There are then usually two or three articles on diverse bioethical issues, responses to articles in previous journals, issues for research ethics committees and clinical ethical situations. The journal is particularly good for its bibliographic and source material, both for the special section and for general bioethics. 

The Hastings Center Report is the Journal of the Hastings Center, a nonprofit, nonpartisan organisation that carries out educational and research programmes on ethical issues in medicine, health care, technology and the environment. The journal seeks contributions that address such topics as the ends of medicine; the relation of science, technology and society; the nature of human nature; the responsible individual; and the moral community. 

The Hastings Report is published six times a year.   Usually, the articles are on diverse topics but there are symposium volumes on such topics as “Human primordial stem cells” and “Organ transplantation”.  There are also regular special supplements which are in-depth articles on subjects such as “Prenatal testing for genetic disability: reflections and recommendations”, “Empirical research on informed consent”, and “Religious voices in biotechnology: the case of gene patenting”. Also appearing in every issue is a case study with commentaries, “at law” which looks at particular legal issues, book reviews and research briefs. 

The Linacre Quarterly is the Official Journal of the United States Catholic Medical Association. It does not have a formal association with United Kingdom-based Linacre Catholic Bioethics Centre although it appears to share the aim of the UK Centre, which exists to help Catholics understand the Church's position on many contentious questions in medical ethics.   The articles in The Linacre Quarterly however are more aimed at Catholic doctors and their practice of medicine, based on the beliefs and teachings of the Catholic Church.

The journal is published quarterly.The articles are usually quite short and although primarily written for doctors, are not too technical. An example is the August 1999 article on “Moral and medical considerations in the management of extrauterine pregnancy”. This article is on ectopic pregnancy and examines the medical and morally permissible management of ectopic pregnancy. It takes each of the current therapeutic options for treatment of an unruptured ectopic pregnancy, what the moral implications of each of these options are and concludes with an alternative ethical analysis. Most volumes contain a book review and a bibliography of current literature “thought to be of interest to readers because of its moral, religious, or philosophic content”.
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1/4/2001