Issue Ten

In July 2003 the New Zealand Parliament voted 60 to 57 against a Private Member’s Bill, “The Death with Dignity Bill” that sought to legalise euthanasia, or more correctly, physician-assisted suicide. The seemingly close vote contained a number of Parliamentary members who, while against the Bill, wished it to go to a Select committee to allow further public debate. 

This year staff at The Nathaniel Centre have spent considerable time and resources critiquing this Bill from the perspective of both faith and reason. In communicating this analysis through a variety of written and oral presentations we both complemented the work of other church, medical and hospice groups who opposed euthanasia and gained considerable insight into this debate. 

We also strove to promote critical analysis on the presuppositions that drive the call for euthanasia. This call is built upon a belief that suffering is meaningless, that increasing isolation of the elderly is inevitable, and, that self-determination and personal autonomy are not subject to the common good. 

In the process of critical reflection faith is as essential a component in the search for truth as is reason. Both are required, and together, because, as Pope John Paul II writes in Fides et Ratio, faith by itself leads to a type of fundamentalism and reason by itself ultimately leads to disappointment.

Nevertheless, to think in terms of both faith and reason is not necessarily straightforward, particularly in the field of bioethics and certainly not on the topic of euthanasia. 

In speaking to various audiences on euthanasia different responses to the interconnection between faith and reason are evident. Some audiences seem to be averse to the scientific and the rational while others are dismissive of attempts to draw on the faith or spiritual implications of physician-assisted suicide. Both of these extreme positions make moral reasoning and ethical reflection unbalanced and confined and inevitably result in people talking past each other. 

In its acknowledgment that pain and suffering are multi-dimensional the hospice movement in New Zealand implicitly recognizes that the community draws on both sources - faith and reason - in its search for truth and in coming to terms with terminal illness. The community in turn has a deep appreciation that its sources of strength and meaning are understood and respected and are an integral part of the holistic care offered by hospice. 

This reassurance led a retired medical specialist to make the following observation in a recent letter of thanks to the Nathaniel Centre: 

“The vote in the face of powerful media promotion is striking. The Sunday Star Times openly espoused Euthanasia. The defeat was, of course, due to the Hospices and their remarkable community penetration – South Auckland Hospice, for example, has only 9 beds, 250 patients under care at any one time and 450 volunteers – Arohanui Hospice in Palmerston North has 230 volunteers. Community financial support is astonishing. Perhaps it is better to own the community than the media..?” 

Doubtless the debate as to how we as a community should care for the terminally and chronically ill will continue particularly as the population continues to age. This debate is healthy especially if it includes all the wellsprings of wisdom within the community. It is also valuable because it raises the profile of palliative and hospice care and its comprehensive focus on the needs of the dying as outlined in the National Palliative Care Strategy Document. 

Consequently, a further lesson from the recent debate is that there is a clear need to close the gaps in Palliative Care. This is particularly necessary in the care of those dying from diseases other than cancer. Such a process would enable better access to hospice care - a need underscored by the World Health Organisation which recommends that governments not consider the legalization of physician-assisted suicide and euthanasia until they have demonstrated the full availability and practice of palliative care for all citizens. 

The influence of the hospice movement on the community has been profound. Such an influence is easily underestimated, particularly when one considers the more celebrated cases that were given an unbalanced profile by the media. In these cases it was suggested that there is very little respite care for families who are at the end of their tether and therefore the only option was euthanasia. 

To those who may suggest that the care of the dying is too difficult and too daunting it is perhaps timely to remember that the profound influence of hospice in New Zealand has only ever been built by tending to one patient’s needs and his or her family’s needs at a time. With such care hospices have built upon the inspiration of their charismatic creators since the founding of New Zealand’s first hospices in 1979. In making patients and their families the focus of their care, they have helped people who are especially vulnerable negotiate the very real roller-coaster of exhaustion and grief. Central in such a process has been the role played by volunteers who help to bind the dying into the community of the living. In the use of their myriad skills and in their gift of time and presence they strengthen hospices’ recognition of the relational nature of community. 

The debate also underscored the pivotal role that the medical profession plays in the network of community relationships. The strong opposition to “The Death with Dignity Bill”   by The New Zealand Medical Association reminded the community of the deeply reflective approach that doctors have to their traditional role as healers and of the respect that the community has for this role. This insight was strongly expressed by the previously quoted correspondent: 

“To my surprise, the argument from within the medical profession, that killing by doctors would destroy the ethical Hippocratic healing basis of medicine, was counted as a highly relevant cogent point. A group of doctors seeking to explain the high road of true patient service is a truly potent force.” 

The narrow margin by which this Bill was defeated is a warning. Even though this legislation cannot be presented again before this Parliament there is no doubt that the advocates of euthanasia will accelerate their campaign for physician-assisted suicide. While we give thanks that faith and reason have prevailed in this debate we do so knowing that much work remains. 
_______________________

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2003

“The return of Ludwig! ‘A Further Feast of Beethoven’ was again highly successful in Auckland, Wellington, Christchurch and Dunedin. Of the many letters and emails received there was one from a young newcomer to symphony concerts that summed up the power of the music: “I was full of cold and nearly didn’t go, but I’m glad I made the effort – it was just great. Wilma was fantastic (Romances). Saturday night was great as well. I have to say the best piece was Symphony No 9. It was absolutely stunning. I can’t believe he was deaf when he wrote it. Unbelievable! I can’t say enough about it. I was spellbound. When I looked at the programme and saw it was 67 minutes long I thought ‘oh, my goodness’. But the time just flew by. I had tears in my eyes during the third movement. And the drums in the second movement were fantastic. I was still talking to myself about the night long after I got home. Incredible…” [1] 

What makes us human?
One of the surprises to emerge from the Human Genome Project was the number of genes humans have – a mere 30,000. That may sound a lot, but when compared with the number in simpler organisms such as fruit flies (13,000) and mustard weed (26,000) it somehow doesn’t seem enough. How can the complexity of the human person be produced by 30,000 genes, when a weed has only 4,000 less? 

We are undeniably more complex than the yeast in our bread and the weeds in our gardens, and presumably that should be reflected in some way in our genetic makeup. There is another measure that can be used to compare our genome with that of other organisms. Genes are made up of DNA. A DNA molecule is like a ladder, with the sides of the ladder composed of sugar and phosphate molecules, and the rungs formed by units called base pairs. Counting the base pairs in an organism is another way of measuring the size of its genome. So perhaps we can explain our human complexity by considering how many base pairs we have in our DNA?

The human genome contains approximately 3 billion base pairs, the kind of number that might more adequately reflect who we are. But frogs have a similar number of base pairs, and our 3 billion does not come close to that of a single-celled micro-organism called Amoeba dubia which has a genome 200 times larger than ours. As far as genomes are concerned, the amount of DNA an organism has is not a reliable indicator of complexity, nor is the number of genes. These factors are not the determinants of our humanness. 

If numbers of genes and amount of DNA do not explain our uniqueness, then what about the nature of our genes?   Surely there must be something that makes them human genes?

“Chimpanzees are so closely related to humans that they should properly be considered as members of the human family, according to new genetic research. Scientists from the Wayne State University, School of Medicine, Detroit, US, examined key genes in humans and several ape species and found our "life code" to be 99.4% the same as chimps…other researchers last year put the similarity at around 95%; the figure you get depends on precisely which differences you look at.” [2]

In December 2002 the draft of the mouse genetic code was published in the scientific journal Nature. The published code shows that about 80% of genes in mice and humans are the same. The similarity rises to 99% if classes of genes are considered rather than individual genes as, for example, mice have more genes involved in reproduction and smell than we do.

We also share many genes with more humble organisms - about half with the fruit-fly and the nematode worm, and about a fifth with yeast. Scientists have also identified more than 200 genes in the human genome that can be traced to bacteria.

The mystery deepens. How can human uniqueness be explained by a genome in which so many genes are shared with other species?

The Human Symphony
The 90 members of the New Zealand Symphony Orchestra play 22 different instruments, all of which have a range of musical notes. This article begins with a letter from a spellbound concertgoer. On the night in question Beethoven’s intricate score enabled the players to re-create his Ninth Symphony. Instruments came into and left the piece, re-entered and then were silent. Some instruments played for most of the symphony, others played for shorter times. 

In the programme of concerts the 90 players and their instruments brought not only Beethoven’s Ninth Symphony to life, but also works by Dvorak, Tchaikovsky, and Brahms. Each time the same players and the same instruments worked together, each time following a score or pattern that produced a unique piece of music. 

If we were to try comparing Beethoven’s Ninth Symphony with Dvorak’s First Symphony by counting the number of instruments, or the types of instruments, we would not be able to distinguish between the two pieces. Both would have the same components, the 90 players and 22 different types of instruments of the NZSO. The uniqueness of each of the two symphonies lies in the intricate multi-dimensional pattern in which the instruments are played. That intricate and unique pattern is contained in the musical score for each work, and it determines when and for how long each instrument plays, and what it does while it plays. 

So it is with our genes. Genes produce proteins, the building blocks of our bodies. In a chimpanzee and a person the same genes create two different beings, not because the genes are different, but because genes are switched on and off in different patterns. Individual genes can also produce more than one type of protein, just as an instrument can produce different notes. This intricate multi-dimensional interaction of the genes controls the development of an organism. The head of a chimpanzee is a different shape to that of a human because the genes involved are switched on for different lengths of time – the jaws of a chimp grow for longer than those of a human at a similar stage of development, and the cranium grows for a shorter time. Each type of organism has its own unique genetic pattern which guides development, not just in the early stages, but throughout life. 

When the genomes of organisms of different levels of complexity are compared – for example, single cells, plants, worms, chimpanzees, humans - we find that with increasing complexity, relatively few new genes are added to the genome. The genes that are added are those that control other genes, rather than genes which have new functions. This changes the way in which genes are used, so that as the pattern of interaction and use becomes increasingly complex, a more complex organism results. 

As a result we cannot claim exclusive ownership of much of our DNA and genes. The terms ‘human gene’ and ‘human DNA’ are in this sense misleading. They imply a uniqueness and ownership of genes that are in fact predominantly the same as those found in other mammals, and to varying degrees in other forms of life. If we have any genes that could be described as particularly our own, they are the small group of genes which determine how other genes are turned on and off at different stages of development and in various parts of the body. 

Perhaps the term ‘human genes’, used so casually in public discussion, has led us into a cul-de-sac. In focusing on the genes we thought were unique to ourselves, we may have begun to subtly and imperceptibly attribute our humanness to DNA molecules. Perhaps we are in danger of confusing the whole with the parts, of reducing the symphony to the instruments. By themselves, these genes do not appear to be the answer to our ultimate question - what makes us human? 

Our Relational Nature
“The experience of love, properly understood, remains a simple and universal gateway through which everyone can pass in order to gain an awareness of what makes a person a human being: reason, affection and freedom.” [3] 

In the 1950s Professor of Philosophy Karol Wojtyla was writing about the human person, about a “rational and free concrete being, capable of all those activities that reason and freedom alone make possible." Nearly 50 years later, the words of Karol Wojtyla, now better known as Pope John Paul II, identify love as the gateway to understanding our humanness. The wisdom of his decades of reflection is revealed in his straightforward assertion that everyone can become aware of what makes us human. Such knowledge is not the preserve of philosophers, theologians and other academics. It can be accessed by anyone who reflects upon and seeks to “properly understand” their own experience of love.

At the heart of this approach is the relational nature of the human person. Our capacity for relationship with God, with self, and with others through love and self-giving is the very essence of our human nature. This three-way relationship draws on and integrates all the attributes that we identify with humanness: conscience and moral judgement, freedom and responsibility, reason and free will, our openness to the transcendent, and our ability to ask questions about what is ultimately important. We have a concept of ourselves – we know ourselves as persons and as members of a family and other groupings – and we know that others also have such a self-concept. We have the ability to make decisions that favour the good of other persons rather than our own self-interest, and to form social structures of a complexity not found among animals. We know that we will die, and this anticipation of death affects how we act and how we live. At the physical level, the tool that most distinguishes us is language, and in particular, symbolic language which allows us to represent general ideas and abstract concepts. 

Human infants are born with capacities for self-consciousness, rational thought, and language – characteristics that are part of what makes us human. But what about those few infants who are born without some of these capacities? Of course these children are human. In fact their lives alert us to a gap in our analysis. The attributes to which Pope John Paul II refers enable us to “gain an awareness” of what makes us human. He assumes the presence of the most basic attribute that makes us human, so obvious that it does not have to be stated. Humanness depends first and foremost on our lineage, because we are born into a network of past, present and future human relationships. And if we accept that most basic point, then we have returned again to the issue of our genes. 

We may share most of our genes with other species. But those genes, together with the few we can call our own, interact with one another and with the environment in many layers of complexity. The unique pattern of that genetic complexity links us to our forebears and to the rest of the human species, rather than to any other species.

Humanness is not attached to each individual gene but to the complex pattern in which our genes interact with one another and with the environment. Separated from the orchestra, and without the musical score, the violin is not the symphony. It could be part of any ensemble, and could potentially participate in creating many different musical works. There is a parallel with individual genes. 

‘Human’ Genes in Other Organisms
The de-mystification of our genes by science has raised questions about their humanness. It has also raised questions about their use. 

“Scientists have for the first time successfully inserted human genes into a pair of lambs, endowing them with the DNA to assist burns victims. The two transgenic lambs, named Cupid and Diana, entered the world armed with a human gene which gives them the ability to produce human serum albumin, a protein that is often used in surgeries and is essential in the treatment of burns victims. If all goes well the lambs’ mammary glands will produce milk with the serum, which can be extracted and used to create drugs for humans”. [4] 

Genes determine what proteins are made in an organism. For scientists searching for useful applications of our burgeoning genetic knowledge, genes are often simply the means to make a particular protein. Twenty years ago a gene copied from the human genome was inserted into bacteria, resulting in a new and efficient way of producing human insulin, a protein of great significance to diabetics. The technology has advanced to the point where new genes can be inserted into the genome of many different living things – plants, animals, bacteria. The inserted gene is coupled with a promoter, which switches it on in a particular part of the organism (for example, the mammary glands) allowing easy access to the protein that results. 

Using genes in this way has exciting possibilities. At the same time it creates unease and even fear. In the media the inserted genes are often described as ‘human genes’. In fact, these genes are not a stretch of DNA removed directly from a human cell, as the term ‘human genes’ implies. They code for proteins found in humans, but they may be copies or synthetic genes constructed by scientists in the laboratory. Because more than one combination of DNA bases can code for the same component of a protein, a synthetic gene coding for a human protein does not even have to be identical to the gene in our cells producing the same protein. 

Recognising that synthetic genes are being used would be fairer to scientists who work in this field. For those willing to understand the processes involved, it might allay some of the emotions that the words ‘human gene’ and ‘mixing animal and human genes’ conjure up. (Of course, using synthetic genes to produce human and other proteins in animals and plants does not address issues for the other organism involved. This topic would need another equally long article to address.) 

The technology itself is not unethical. Producing proteins that assist people with cystic fibrosis or burns has an obvious human benefit, and such research has an ethical purpose. Given the benefits it could bring to those with various medical conditions, it would be unwise to rule out use of the technology for this purpose, particularly if we do so on the grounds that the genes being used are ‘human’. 

At the same time there are valid reasons to be concerned about some uses to which this technology might be put. Inserting DNA into animals such as chimpanzees to see if we can make them more like ourselves raises huge ethical questions. Why would we want to do this? Curiosity? To create a new species of semi-human servants?   What is the real purpose and endpoint of such research? Research that involves using inserted DNA to produce human proteins in other organisms needs to undergo ethical scrutiny of its purpose, which pre-supposes that we have identified what purposes are acceptable. 

We also need to recognise that not all our genes are the same as those in other organisms. The master regulatory genes which control human development before birth and throughout life should be treated with great caution. Perhaps the use of these genes in other organisms should be outside the limits of what is acceptable.

The emergence of our genes from the shadows has been accompanied by very mixed emotions. We can be excited about their potential for helping us, and many people are. At the same time there is a sense of wariness, a feeling that the best regulatory system in the world might not prevent these scientific advances from somehow endangering our understanding of ourselves. 

As we learn to live in the light of a new understanding of our genes, the greatest danger we face may not be related to the technology itself. We expected our ‘human genes’ to be unique and special and different, but considered individually they are not. There are different responses to this knowledge. Some people fight to avoid any de-sanctifying of our genes, closing off possibilities for their use as a way of retaining belief in their sacredness. Others speak about our genes as mere molecules, complex polymers akin to plastics, with the implication that our human nature can be attributed to the blind operation of physical laws. The gene as sacred component and the gene as chemical structure can both be burdened with too much responsibility for all that makes us human. 

Good regulatory systems with their focus on safety in the use of individual genes do not safeguard us from these deeper dangers that have the capacity to subtly affect our self-knowledge. Every human being has an innate sense of human dignity. It is not always easily articulated, but we intuitively know when some action offends against our dignity or that of others. Are we afraid that in inserting genes that produce human proteins to work for us, we will degrade or diminish our dignity? 

Again, we must not confuse the violin with the symphony. Human dignity is an attribute of the whole person not of the parts. If we let go of ideas about individual genes as ‘human genes’ and embrace instead the totality of our humanness, then like the young new-comer to the orchestra we will look upon ourselves with awe, and say Stunning! Fantastic! Incredible! 

[1] From the website of the New Zealand Symphony Orchestra:   www.nzso.co.nz

[2] Black R. Chimps Genetically Close to Humans,   BBC News Online, 20 May 2003

[3] Pope John Paul II. Special Audience for members of the John Paul II Institute for Studies on Marriage and the Family, 31 May 2001.

[4] Arent L. Lambs get Human Genes, Wired News 22 July 1999.

©
2003

Vatican Official Urges Respect for Biodiversity

VATICAN CITY, AUG. 18, 2003 (Zenit.org).- Recourse to genetically modified organisms calls for proof of their usefulness as well as a verification of the risks involved, says a Vatican official and expert on the matter. 

Given the debates within the Catholic world on the subject, Bishop Elio Sgreccia, vice president of the Pontifical Academy for Life, and director of the Bioethics Center of Rome's Catholic University of the Sacred Heart, spoke on a recent program on Vatican Radio. 

"First of all," the bishop said Aug. 5, "there must not be blind opposition to man's intervention on plants and animals in the genetic field, when the latter does not cause harm and is useful to man himself." 

Second, there must be scientific verification of "the risks ... both on the natural and pharmaceutical products as well as on the genetically modified organisms themselves," he said. 

"It is the verification of the risk, the so-called principle of precaution. Until now no very serious risks have been reported. I think that progress is being made with due caution, with a kind of experimentation before introducing these products in the market," Bishop Sgreccia said. In this connection, he added that it is necessary to respect the "ecological balance, namely, respect for biodiversity." "The new species must not supplant the pre-existing ones," he said. "Biodiversity must be safeguarded in the world, as it is wealth for all." 

"In the third place, the citizen must be informed," namely, when these products are commercialized they must have a "label," the Vatican official said. He added that the introduction of genetically modified organisms must respect "the economic ethic at the international level." 

In other words, "genetically modified products must not serve for the exclusive use of enterprises, of great industries," the bishop said. "Industries must benefit from a just profit, but must not be turned into a monopoly which becomes a serious burden for those needing to take recourse to these products." 

"The question on biotechnologies, moreover, must not be used with protectionist objectives," he said. The bishop explained that there "must be a balance, respect for the ethical concerns of the market, not only for the ethical concerns of health." 

In a word, according to Bishop Sgreccia, the key lies in harmonizing "science -- with its undoubted capacity to develop, to verify objectives truths of an experimental character -- and ethics, which must relate the resources of the sciences to human values and persons, which must be at the center." 

When addressing the Ministerial Conference on Biotechnology, held in Sacramento, California, in June, Archbishop Renato Martino, president of the Pontifical Council for Justice and Peace, explained that the Holy See is gathering information on the problem in order to develop "a clear view on the use of GMOs."

In May 2000, the government established the Royal Commission on Genetic Modification. In its report (July 2000) the Royal Commission made many recommendations, most of which were accepted by the government. The government has since introduced a Bill into Parliament called the “New Organisms and Other Matters (NOOM) Bill” covering a range of issues in response to the recommendations of the Royal Commission.   It proposes amendments to the Hazardous Substances and New Organisms (HSNO) Act 1996 (47 clauses), the Medicines Act 1981 (8 clauses) and the Agricultural Compounds and Veterinary Medicines (ACVM) Act 1997(3 clauses). 

Earlier this year The Education and Science Committee called for submissions on the above bill.   The following submission was prepared by staff of The Nathaniel Centre in collaboration with its Panel of Advisers and Bishops from the New Zealand Bishops’ Conference. 

The introduction of the NOOM Bill includes recommendations that streamline the approval of the genetic modification of new organisms in laboratories and that will also allow for the approval of the conditional release of new organisms. 

Readers seeking more background on the reasoning behind the particular stance taken by the New Zealand Bishops are advised to re-read the Bishops original Submission to the Royal Commission (see The Nathaniel Report   Issue 2 or the Nathaniel website www.nathaniel.org.nz).   This earlier submission canvasses many of the ethical dilemmas raised by the prospect of genetic modification while presenting a response grounded within the Catholic Moral Tradition. 

Submission on behalf of The New Zealand Catholic Bishops Conference and The Nathaniel Centre – The New Zealand Catholic Bioethics Centre.

1.       The Nathaniel Centre – The New Zealand Catholic Bioethics Centre was established in 1999 as an Agency of the New Zealand Catholic Bishops Conference. Its role is to address bioethical and biotechnology issues on behalf of the Catholic Church in New Zealand.

The Church’s Approach to the Environment

2.       In the 1960’s a growing environmental consciousness began to challenge concepts of development across the world. During the decade when this movement was emerging and gathering strength, the Catholic Church was immersed in its own form of renewal, the Second Vatican Council. Fundamental concepts concerning care for the environment and our use of the “goods of the earth” can be found in the documents of this Council [1962-1965]. These concepts have been built on and expanded over the last forty years in documents which have emphasized in many different ways that human dignity, care for the environment and sustainable development are inextricably linked. 

3.       The most recent of these documents is the Venice Declaration, signed by Pope John Paul II and Greek Orthodox Patriarch Bartholomew I in June 2002. In this Declaration there is a strong call for an environmental ethical code which would be acceptable to a broad range of people: 

“…We therefore invite all women and men of good will to ponder the importance of the following ethical goals: 

1.       To think of the world’s children when we reflect on and evaluate our options for action.
2.       To be open to study the true values based on the natural law that sustain every human culture.
3.       To use science and technology in a full and constructive way, while recognising that the findings of science have always to be evaluated in the light of the centrality of the human person, of the common good and of the inner purpose of creation...
4.       To be humble with regard to the idea of ownership and to be open to the demands of solidarity. Our mortality and our weakness of judgment together warn us not to take irreversible actions with what we choose to regard as our property during our brief stay on this earth. We have not been entrusted with unlimited power over creation, we are only stewards of the common heritage.” 

4.       We make our submission to the Select Committee out of this tradition of Catholic thought. The points we wish to make about the proposed legislation build on and develop the position taken by the New Zealand Catholic Bishops in their submission to the Royal Commission on Genetic Modification.  

5.       In their submission to the Royal Commission the Bishops said: 
“We do not see the technology of genetic modification to be in conflict with ethical values… We believe that all human beings have a role as co-creators with God, and as participants in the evolutionary process. The responsible use of genetic modification is a further challenge for us as stewards of the gift of creation. To use genetic modification for both our benefit and that of other species, while at the same time preserving the rich biodiversity of life, is the essence of this challenge.” 

6.       They also noted that: 
“Beneath any considerations of technological possibility, safety, commercial gain, therapy or environmental impact lies the fundamental question of the moral acceptability of genetic modification. In itself, the technology of genetic modification is not unethical. Like many human inventions it has great potential for good, but also the potential for harm which could affect not just current but future generations. Ethical and moral principles need to be at the heart of our decision-making in relation to genetic modification.”   

7.       This position in turn reflects the position on genetic modification taken by the Pontifical Academy for Life (Rome) in its 1999 document “Animal and Plant Biotechnologies”.   

The stated intention of the New Organisms and Other Matters Bill   - “to provide a practical framework for proceeding with caution in the management of new organisms while preserving opportunities” - is consistent with the general principles underlying the approach of the Catholic Bishops of New Zealand to biotechnology.  

We make the following specific points in relation to the proposed “New Organisms and Other Matters Bill”: 

Cultural Ethical and Spiritual Considerations 

8.       In the Report of the Royal Commission on Genetic Modification the Commission noted that an “effective process needs to be found to ensure that key cultural and ethical considerations are not excluded” [H 1:25].   The Explanatory Notes for the New Organisms and Other Matters Bill states that the Hazardous Substances and New Organisms Act (HSNO), as it stands at the moment, does not fully reflect the ethical, cultural and social concerns (page 15). 

9.       We welcome the establishment of Toi te Taiao, the Bioethics Council to act as an advisory body on ethical, spiritual and cultural dimensions in the use of biotechnology and to assess and provide guidelines on biotechnological issues involving significant ethical, cultural and spiritual dimensions. 

10. Both HSNO and The New Organisms and Other Matters Bill (NOOM) lack provision for a means by which the broad guidelines and principles provided by Toi te Taiao, can be applied at a case by case level.   Unless such provision is made in legislation, the incorporation of a means for ensuring that the ethical, cultural and spiritual dimensions of particular applications will be routinely and adequately taken into account is left to the discretion of ERMA. This is unacceptable.

11. We support the powers of the Minister to “call in” particular applications when “the decision on the application will have significant cultural, economic, environmental, ethical, health, international or spiritual effects.”   We support the addition of “cultural, ethical, and spiritual” effects as potential reasons for calling in particular applications.

12. We do not believe that making provision for the minister to “call in” particular applications will, however, result in a legislatively prescribed process that fully reflects the cultural, ethical, and spiritual effects as stated in the Bill’s intention.   Ethical, cultural, and spiritual features must be an integral part of all applications from their very inception and in all subsequent processes of review and approval. Therefore, the routine consideration of these elements needs to be a constitutive part of the consideration of all applications rather than, as is proposed, an add-on feature in exceptional circumstances, and only then at the discretion of the Minister. If ethical cultural and spiritual features were integrated more adequately into the application process, via the legislation and ERMA’s Methodology, it would address the need to make HSNO more fully reflect these concerns.

13. We are concerned that the “risk management” framework – which is the basis on which ERMA operates – will not be appropriate for a comprehensive assessment of the ethical, cultural and spiritual dimensions pertaining to applications.   A broader framework is required. A possible way forward may be through an ethical committee structure modeled on the existing regional Health and Disability Ethics Committees. These independent committees consider the ethical issues associated with health care research and the introduction of innovative treatment. They do so in an interdisciplinary manner that takes full account of the scientific, social, ethical, cultural and spiritual aspects of research protocols.

Minimum Standards 

16. The Report of the Royal Commission on Genetic Modification states that “there will be times when we may chose to restrict choice because of a societal decision that there are some uses of a technology that are unacceptable for cultural, spiritual or ethical reasons…even were it to be ‘safe’” [H1: 32].   Therefore, in line with our comments made above, we believe that Section 36 [Minimum Standards] of the HSNO Act, which sets out the reasons for which the Authority may decline an application, should include a standard covering significant adverse effects on the culture, spirituality, and ethical values of New Zealanders.   Without this expansion of the minimum standards we believe that the HSNO Act does not adequately address ethical, cultural, spiritual issues, which according to the Explanatory Notes is one of the purposes of the NOOM bill. 

Membership of Authority 

17. Membership of the Authority should be interdisciplinary and representative of a variety of persons with the appropriate scientific, social, cultural, ethical and spiritual backgrounds and experience. We support Clause 8 which addresses Māori interests, and submit that it should be extended to include ethical, spiritual and cultural knowledge under “matters”. In this respect we would see culture as including the culture of all New Zealanders.


Nga Kaihautu Tikanga Taiao 

18. While we welcome a legislated place for Nga Kaihautu Tikanga Taiao, in practical terms this advisory status does not guarantee Māori any greater participation in the actual decision-making arena of the Authority. We do not believe this structure will give sufficient consideration to Māori community views as part of mainstream decision-making about genetic modification.   We submit that Māori perspectives need to be an integral part of the decision-making process rather than being primarily part of an advisory role. We believe that Clause 8 is a vital component in giving Māori this place in decision-making, and that without acceptance of Clause 8 the new statutory status of Nga Kaihautu will change little for Māori.

19. We submit that the appointment of members to Nga Kaihautu Tikanga Taiao needs to be done in consultation with relevant Māori authorities. 

Application for Approval to Import or Release Genetically Modified Human Cells and Tissues 

20.   With regard to the importing of genetically modified human cells or the genetic modification of human cells within New Zealand, we support the amendment to the definition of organism to include a human cell. This will ensure that the gap in current legislation is closed. 

Conditional Release 

21. The HSNO Act currently provides for two scenarios concerning the release of genetically modified organisms into the environment, namely, no release or full release. Conditional release of genetically modified organisms represents a precautionary step, which is in keeping with the findings of the Royal Commission. It gives ERMA power to authorise release with certain conditions. We support this more cautious approach and suggest that Government consider conditional release as the only form of release for new organisms for a defined period of time. 

Pecuniary Penalties and Civil Liability for Breaches 

22. We support the strong pecuniary liability regime including the size of penalties because they help to underscore the need for safety and caution in the use of genetically modified organisms.
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The Nathaniel Centre 2003

July 29-August 3, 2003 

Recently Father Michael McCabe, Director of The Nathaniel Centre attended the inaugural Colloquium for Catholic Bioethicists in Toronto, Canada. The Colloquium was organised by the Canadian Catholic Bioethics Centre and sponsored by the Knights of Malta. Bioethicists and moral theologians from over 20 countries considered the care of the frail elderly and the dying from the perspective of globalization. 

A growing proportion of the world’s population is ageing, but few resources are available to meet this looming crisis.   Elderly people face challenges that increase over time.   Great disparities exist within and among nations, however, in providing health care and social and spiritual supports for the elderly, particularly those frail elderly who have complex and multiple needs.   At the same time, increasingly the legalization of euthanasia is seen as a ‘solution’ to ageing and dying around the world. 

The following “Consensus Statement” was drawn up by participants at the Colloquium. 

Globalization refers to the historical process of transformation by which the nations and peoples of the world become more closely connected through the mediums of markets, banking, international business and trade, travel, telecommunications, transportation and other technologies. This process, like technology, holds the promise of good and the threat of what is harmful. The good effects relate to better knowledge of, and a greater exchange of knowledge from, other lands, cultures and traditions, and in the opportunities to share in the benefits of health care, industrial development and wealth. It also involves the commitment of a high percentage of nations and peoples to the Universal Declaration of Human Rights which transcends national boundaries and cultures. The harmful effects relate to consumerism, the degradation of cultures, political and economic control, and exploitation of the poor. Care must be taken to recognize and respect not only the values which all share in common, but also the diversity of cultures. ^[1] 

The adverse consequences of globalization, according to a United Nations report on human rights, can be serious and extensive: 

The negative impact of globalisation- especially on vulnerable sections of the community - results in the violation of a plethora of rights guaranteed by the Covenants.   In particular, the enjoyment of fundamental aspects of the right to life, freedom from cruel, inhuman or degrading treatment, freedom from servitude, the right to equality and non-discrimination, the right to an adequate standard of living (including the right to adequate food, clothing and housing), the right to maintain a high standard of physical and mental health, and the right to work accompanied by the right to just and fair conditions of labour, freedom of association and assembly and the right to collective bargaining, have been severely impaired. ^[2] 

Globalization has effected the perception of self as belonging not only to family and local communities, but also to the world community. Crucial to a sound understanding of the human community is respect for the inviolability, purposefulness, and inestimable worth of each human being and of the relationships between human persons. 

Social Justice
The Catholic social justice tradition has foundational principles that can be used as tools of analysis to offer valuable direction for those immense issues that face a global world. These principles and tools of analysis include solidarity, subsidiarity, the common good, and the preferential option for the poor. Solidarity includes the responsibility of the community for itself and its members at every one of its levels. Particular concerns are the exploitation of the poor in all nations as the subjects of medical research, and the setting of priorities in health care and social support.   Subsidiarity entails that community responsibility is to be exercised at the individual and local levels where the effects are felt, and where those levels are capable of exercising that responsibility. A commitment to the common good involves the collaboration of all members of society to assist its members to realize those goods that human beings need in order to flourish. Some examples are water supply, police force, and an education system. In applying the principle of the common good to the development of new technologies and research priorities, the needs of the less affluent are to be given priority. 

It follows that the world community has responsibility for the protection and promotion of human life in its biological, intellectual, social, moral, and spiritual dimensions. 

Promoting a Culture in which Human Beings Flourish
A culture where human beings flourish is a culture of life. That culture is achieved by enhancing what promotes human flourishing and avoiding what is restrictive of human flourishing or what causes human decline.   The meaning of life is found in giving and receiving love. Love gives meaning to suffering and death. Suffering and death are a mystery, but the process of illness and dying is an opportunity for growth in understanding and love. Science and technology should always be at the service of humanity and the development and flourishing of each person in a way that is consistent with the Christian tradition. More particularly, science and technology ought to enhance the formation of relationships that support and sustain a person in love and empathy. ^[3] 

Bioethical Issues near the End of Life
1. We must regain an understanding of the mystery of death in order to understand the ethics of dying. 

2. For the frail elderly and dying this has particular meaning for the application of technology in a way that defends and promotes the inherent dignity and intrinsic value of each person, particularly their need for meaning and hope. 

3. Even at the end of life, there is an obligation to be truthful in communicating a terminal diagnosis. Information may be communicated step by step, without lying or deception, according to the patient’s ability to accept it. Securing informed consent or informed refusal of treatment varies according to culture: it is deemed imperative that the patient understands the diagnosis and treatment. The wishes of a suicidal patient, professionally assessed to be so, may be overridden on the grounds that the right to life is inalienable (cannot be given away). Under certain conditions, incompetent patients may, if necessary, be treated in accordance with their best interests, with due regard to their known or presumed wishes. 

4. Life is a precious, basic good, but the obligation to preserve life is not absolute and overriding. Withholding or withdrawing measures that are disproportionably burdensome or fail to serve a reasonable purpose may be morally justified. This does not constitute euthanasia, which we understand to be, in the strict sense, “an action or omission which of itself and by intention causes death, with the purpose of eliminating all suffering.” ^[4]    Therefore the term “passive euthanasia” is confusing, ambiguous and misleading. It does not lead to sound moral analysis and should be avoided.

5. The reasons for withholding treatment may also justify withdrawal of that treatment at a later time. 

6. This colloquium affirms the Church’s traditional position that assisted suicide and euthanasia are morally illicit. 

7. The colloquium acknowledged that the World Health Organization defines palliative care as an approach that “ intends neither to hasten or postpone death” and that “ improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems.” ^[5] 

8. This colloquium asserts that palliative care, properly defined, is the antithesis of euthanasia. In the care of the dying, palliative care is best understood as one aspect of hospice, a profoundly Christian practice, both historically and ethically, that is dedicated to making the last days of a person’s life comfortable and meaningful. This is achieved by supporting and sustaining the person, relieving pain and discomfort, and maintaining function in order to assist the patient to live with dying. 

9. Catholic bioethics affirms the use of medication, consistent with the rule of double effect, when the dying patient requires doses of medication that might unintentionally hasten death, provided that the intention is only to relieve specific symptoms such as pain or shortness of breath, and the suffering caused by these symptoms is proportionately grave. By definition this is not euthanasia.

10. In regard to medical research, the Church’s role is to represent the interests of vulnerable people to prevent all forms of exploitation, particularly those related to research conducted in less affluent societies.

Catholic Social Teaching and Care of the Frail Elderly and the Dying

11. The alleviation of material, social, and spiritual poverty of the frail elderly is a fundamental obligation that Catholic health care and Catholic bioethics must address, according to the preferential option of the poor. 

12.  Globally, discussions about the care of the frail elderly and the dying must involve the participation of less affluent peoples and societies. 

Implications for Catholic Health Care Delivery

13.  Decision making and setting organizational priorities in health care require not only sound procedures, but also attention to foundational goals and ends of care which are consistent with human flourishing. 

14.  Health care workers trained in personalist ethics should promote a culture in which human beings flourish, and collaborate in international outreach programs. 

15.  Catholic hospitals, to remain Catholic, must abide by Church teaching, and engage staff who agree to practise their profession in accordance with the teachings of the Church. 

Implications for Catholic Bioethics Centres and Catholic Bioethicists 

16.  Bioethics is essentially an interdisciplinary enterprise involving the collaboration of several different competencies, including matters having to do with political and organizational structures. 

17.  Bioethicists should analyze health care as a necessary antecedent to understanding health-care ethics. We will not understand health care ethics unless we recognize the limits of medicine in treating ills that are moral and spiritual in nature.

18.  Interfaith bioethics, which emphasizes dialogue and understanding, is a reflection of the multi-cultural world and needs to be actively fostered. 

Conclusion
Morality should be formative of law reform and not determined by it.   Critical reflection ensures that foundations and moral sources are as important as the process of decision-making. The moral formation of Catholics involves increasing awareness and understanding of these foundations and sources, and attending to how to be a fully human person, and a true follower of Christ.  
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[1]   Globalization can also be conceptualized as a transformation of human perception: the compression of the world and the intensification of consciousness of the world as a whole...concrete global interdependence and consciousness of the global whole in the twentieth century (Roland Robertson, Globalization: Social Theory and Global Culture, London: Sage Publications, 1992, p. 8). 

[2]   Globalization and Its Impact on the Full Enjoyment of Human Rights.   UN Press Release E/CN.4/Sub2/2000/13.   June 15, 2000, paragraph 44.

[3]   John Paul II, Evangelium Vitae no.81.

[4]   John Paul II, Evangelium Vitae no. 65. 

[5]   World Health Organization, Cancer Pain Relief and Palliative Care. Technical Report Series No. 804 (1990).

The Nathaniel Centre
The New Zealand Catholic Bioethics Centre
©
2003