Editorial: Listening to the Culture

Michael McCabe
Issue 9, April 2003

When people think about bioethical issues they inevitably bring their own human needs and fears into the process. Without a deeper and more distanced knowledge the only way an individual can respond to the complexities of an issue is through their feelings and emotions.

The feature article in which a paraplegic begs that stem cell research be accelerated so that he might walk again seems to provide a simple solution, especially if an embryo from which the stem cells will come is described as 'less than human, merely a ball of cells'. The image on the television of a person with a chronic illness demanding the legalization of physician-assisted suicide is the vicarious experience, out of which comes the call for a simplistic solution to an issue of great complexity.

The immediate response to these types of issues is focussed on the individual situation. Issues in medical research, innovative treatment and at the end of life are primarily about the individual. However just as individuals together make up a society, there is a societal dimension to the decisions made by individuals. As biotechnology has advanced over the last fifty years, our understanding of the societal dimension has expanded to include not only those who coexist in time, but those who are yet to exist.

The initial problems confronting bioethics were related to medical research and experimentation on human subjects. They were concerned with what happens to people during their lives. With the advent of technology such as the dialysis machine and the ventilator, there came a focus on issues at the end of life; who should have access to technology; to what degree technological intervention was appropriate; and whether a chronically or terminally ill individual had a right to assistance in ending his or her life. Essentially only one generation was involved, and the discussion centred on the issues for individuals and for the co-existing generation.

The advent of IVF, however, brought a focus on how human beings come into existence. The use of assisted human reproduction technology has implications not only for the prospective parents but also for the children born by these methods. Because these issues are about bringing the next generation into existence, two generations are involved, which introduces an intergenerational component to the issue.

The advent of genetic modification extended the complexity of the societal dimension of bioethical issues. Genetic modification is possible in any life form, so new issues about agriculture, the environment and food became intertwined with issues about the use of genetic modification in animals and in human beings, and between species. Genetic modification in the form of germ-line therapy alters inheritable characteristics. The potential downstream effect of human use of this technology involves an endless number of generations.

Cloning represents a radical shift in the way in which human beings could come into existence. As it requires only one genetic parent, it has implications for not only cloned individuals but also their offspring. Stem cell research, while offering therapeutic possibilities for chronic diseases such as Parkinson's and Alzheimer's diseases, creates the dilemma of sacrificing one generation's right to life for another generation's prolongation of life.

Governments around the world are struggling to create legislative frameworks and structures which will provide ethical oversight and risk management for new biotechnologies, as well as taking into account the societal and intergenerational dimensions of these technologies. Public opinion is in many cases divided about issues raised by new developments in biotechnology. The language of "rights" is being heard increasingly ..."the right to have a child", "the right to a cure", "the right to grow genetically modified (or organic) crops", and so on.

Arguments based on a right of autonomy or self-determination inevitably ignore the societal implications of the actions the individual is advocating. However, rights and responsibilities are inextricably linked. Individuals and groups making rights-based claims seldom acknowledge the corresponding responsibilities they have to other individuals and to society. If the word responsibility is used at all, it is often in the context of the responsibility they perceive others have to recognize the "rights" they are claiming.

As the euthanasia debate has gathered momentum in New Zealand in recent months, "the right to die" has become a key claim of advocates of physician-assisted suicide. At a shallow level this is yet another of the spurious rights conjured up by those who do not understand the true nature of human rights. At a more sophisticated level the rationale for the so-called "right to die" is based on expanding an entitlement to refuse unwanted life-sustaining treatment into an entitlement to more active assistance from a physician in bringing about death.

Rights-based demands for the legalization of assisted suicide rely upon separating the person from the web of personal and societal relationships, which are the context for every human existence. A narrow focus on the exercise of a perceived right places beyond scrutiny all those factors and events which have led to the momentous decision to seek one's own death. In a personal context, the claimed right to die falsely designates the physician who offers euthanasia as the only suitable "care-giver", and shuts out all others who might be able to offer more appropriate care.

In a societal context there are serious challenges for law-makers and for all who take part in the debate about legalization of assisted suicide. The first challenge lies in recognizing that calls to legalize assisted suicide are strong indicators that there are failures occurring in the care of the chronically and terminally ill. It is these failures that must be responded to, not the rights-based claims of advocates for the legalization.

A more complex and demanding challenge lies in considering the societal context itself, and its interaction with both the current assisted suicide debate and with any potential legislation. Advocacy for legalization is generally based on individual cases and plays upon people's fear of being in the same situation as the cases described. It is inappropriate for law-makers to respond to the issue only at this individual and emotional level. They have a duty of office, which requires that they consider the broader societal context and carry out a more sophisticated and reasoned analysis. There are features of the societal context that need to be considered if the deeper implications and consequences of legislating for assisted suicide are to be understood. These include:

Demographic trends – An increasing number of elderly people will place pressure on healthcare resources in years to come.

Individualism – Personal independence is a highly prized value in our society, with the downside of this being a need to avoid being a "burden" to others.

Functionalism – An acceptable quality of life often includes an emphasis on fulfilling a role in society. This inevitably impacts negatively on those who have less ability to function in this way, particularly the elderly and vulnerable.

Fear of dying – With only limited understanding of the spiritual and emotional growth that occurs in the last stage of life, many people fear a lengthy physical deterioration more than they fear death itself.

Individual and communal choices are shaped and reshaped by the prevailing values in a society. Both research and the tenor of the debate for the legalization of assisted suicide suggest that these contextual features are already placing the frail elderly, the chronically ill, the terminally ill, and the severely disabled, under increased pressure, even if it is not voiced, to "do the right thing" and relieve society of a "burden". If legislation for assisted suicide is put in place, there is a substantial risk that some features of our society will interact with the legislation in a way which means that over time the right to die will become the duty to die. A "free choice" would no longer be a free choice but rather subtle societal coercion.

We have begun to recognize that new advances in biotechnology have a societal dimension which cannot be ignored, and that an intergenerational component is involved. By comparison the legalization of assisted suicide is an old debate. There is no new technology involved in assisted suicide (if we can exclude crude homemade "death machines" and plastic bags), but we do have new learning from our experience of the societal dimensions of biotechnology to apply to the debate about the legalization of assisted suicide. The effect such legislation may have for following generations matters, as do the complexities of the societal context into which legalization would enter.

In New Zealand we are also moving towards decisions about human assisted reproductive technologies, including the use of pre-implantation genetic diagnosis. The interaction between the decisions we will make about pre-implantation genetic diagnosis and assisted suicide is unpredictable, but potentially does not bode well for those infants born with a disability or a potentially short life span. The Dutch experience, which began with permitting adult euthanasia, has been followed by the emergence of pediatric cases. Acceptance of pediatric euthanasia is now the official policy of the Dutch pediatric and medical associations, and in at least two cases the courts have given no punishment to physicians who have carried out pediatric euthanasia. [1]

On the inside cover of this journal you will read the story of Nathaniel, a baby after whom the Nathaniel Centre and this journal are named. Accompanying Nathaniel in his seven short weeks of life was a profoundly spiritual experience which changed all those involved, myself included. In a society which chooses to accept pre-implantation diagnosis and euthanasia, would Nathaniel have even been born? And if he had been born, would he have been allowed to live his short but influential life span?

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1 Susan M Wolf, "Facing Assisted Suicide and Euthanasia in Children and Adolescents", in Regulating How We Die, ed. Linda L Emanuel, Harvard University Press 1998.

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Rev Michael McCabe, PhD
Director
The Nathaniel Centre