Health care

ETHICS OF GENETICS RESEARCH ON CHILDREN:
CHRISTIAN PHILOSOPHY AND CATHOLIC THEOLOGY

1. In my presentation I would like to show the problem of anthropological and ethical aspects of genetics research on children, but no in classical view. There are the crucial questions: until what age is someone considered a genome child for the sake of requiring these special protections? Can nontherapeutic research on children be justified by benefits to other patients from the knowledge obtained from the research?[1]

I would like rather to approach the anthropological and ethical background of genetics research on children, mainly – as a priest – from the point of view catholic philosophy and theology.

2. First level of difficulty in this view is the classical genetics research on children. The genetics research is a relatively new in the experimental medicine and saddled with responsibility of genetics research on children during Second World War (for example, doctor Mengele and his research on twins). Medical and ethical consequences of these problems were showcased at the trials of Nazi doctors at Nuremberg.

Second level of difficulty that is taken consideration, is in International Ethical Guidelines for Biomedical Research Involving Human Subjects prepared in Geneva by the Council for International Organizations of Medical Sciences (CIOMS). Guideline 14 says: Research involving children. The peculiarity of research involving children are following:

· the purpose of the research is to obtain knowledge relevant to the health needs of children;

· the agreement of each child has been obtained to the extent of the child's capabilities;

· a child's refusal to participate or continue in the research will be respected[2].

Third level of difficulty increases problem when the experiments on children in prenatal phase are taken into consideration. We conduct research on children who sometimes have not physical form of human being, are closed in the womb and take the form of child after born (morula stadium, early unshaped embryo). The problem increases because, the dignity of human being of this child is rejected.

3. The goal of human genetics is to understand the mechanisms of heredity in man, the therapy of disorders, therapy of pain killing and others. Human genetics is the field of medicine and biology (as a important part of human knowledge) and activity restricted to interventions which directly involve the genetic material of human being. Much various conferences, like this, try to take discussion under modern genetics and contemporary clinical research. In Commission of Bioethics Collegium Medicum of the Jagiellonian University genetics research on children are also object of discussion.

According to G. M. Gustafson, we must ask: Given the experiments and technology that make possible increasing knowledge of genetics, are there procedures that interventions ought to be done? What ought not to be done? Which seem to be morally ambiguous? What criteria are invoked to guide both restraints and interventions into biological processes that are genetically based, if not determined? What ends are worthy of pursuit? What risks are tolerable in the light of the probability of certain beneficial and harmful outcomes? What means are judged morally permissible, and why[3].

Considering all of the achievements of modern genetics, all their goals, applications and projects, together with all the difficulties and controversies surrounding genetics research on children, bioethicist Thomas Kraj asking: Should modern genetics proceed in its totality or with the exclusion of some interventions? Should all of them proceed forward unconditionally, on some conditions, or at all? What is the relationship between them and the requirements of scientific progress?[4]

All this questions become more important in the case of prenatal phase of children.

4. I thing, that ethics of genetics research on children in prenatal phase of his or her life are situation on the field anthropological status of human embryo. Arguments against the transfer humanity of human being in his prenatal period are taken from embryology and genetics on one hand, and from philosophy on the other. In the first case we have for example the attitudes of embryologist and geneticist justifying the continuity of development in the whole prenatal period; in the second case we have among others from the metaphysics of man on the priority of existence before its manifestations, human nature before its actualization. Christian anthropology rejects the possibility of moving the status of being a man to some later period[5].

Therefore our the main problems come not from technological treatments, therapeutic or scientific actions, but from anthropological status of human being after conception the egg cell, in the preimplantation stadium, embryos and fetus stadium. Besides in consider issues raised by advances in research and practice, particularly the legal status of fetuses during first trimester of pregnancy, the process of decision-making of parents about genetic research on children, and to some extent the social issues, economic issues.

Those issues contain last Consultation Paper Nuffield Council on Bioethics from London: The ethics of prolonging life in fetuses and the newborn (from June 2005). In the background of this document we read: Progress in clinical care has meant that many more sick babies survive today than did twenty years ago. We are able to provide better care for the mother, to the benefit of her unborn child and, to a limited extent, we may be able to treat the fetus directly.

The main change, however, is that the age at which the fetus can survive outside the womb has been reduced from 28 weeks to as little as 23 weeks, largely though improved methods of ventilation, nutrition and the control of infections. At the same time, diagnostic techniques and knowledge about the development of the fetus and the newborn have substantially improved. Many children overcome their difficult start in life with the help of their families and grow up to have successful adult lives. It is also the case that while a small number of children have very complex problems, their families would generally regard them as doing well and would challenge the view that disability is a medical disorder[6].

5. In this medical perspective are connect ethical issues of genetics research on children and fundamental question about moral status of the embryo or fetus. From a scientific perspective, the origin of a new human being can be traced to the moment when the egg and sperm fuse to form the start of a new life. However, people differ in their views as to whether this event also marks the creation of a new entity with full moral status, i.e. with the same moral and legal rights that are accorded to already born living humans. Those who disagree with this concept of absolute moral status face the difficulty of stating at what stage, and why, human beings should acquire full moral status. Some argue that moral status begins at conception, others with the physical presence of basic neural structures at 54 days after conception. Yet others accord full moral status at the point of birth, or when the infant shows self-awareness at the age of about one month.

The question of moral status bears on several practical issues, such as to what extent measures should be taken to limit fetal pain. It also critical to more fundamental issues such as whether it is ethical ever to cause or allow pain to another person; whether the unborn baby has the same interests or rights (for example, to medical care) as an adult; whether birth changes this status; and whether there is a difference between letting die, or terminating the life of a fully grown fetus at nine months and a baby of the same age. In an area such as this where many differing views are to be expected, there is a broader ethical question, of how best society should balance the varying wishes and needs of individuals[7].

Therefore these problems are an object of discussion not only among scientists but also among philosophers and theologists. For example the Magisterium of the Roman Catholic Church gives solutions to the problems which are involved in research genetics on children as well.

6. In the center of Christian philosophy and catholic theology there is the human being who must be respected – as a person – from the very first instant of his existence to the natural death.

There are a lot of fields of human life where methods of genetic research are used (for example: artificial insemination, artificial contraception »in vitro«, using stem cells, cloning, therapy of neurodegenerative diseases from human genetically modified cells and transplanting fetal brain tissue into Parkinson's disease patients.

Teachings of the Magisterium of Catholic Church basic on personalism philosophy propose respect for human embryos. Principal document about it, is “Instruction on respect for human life in its origin and on the dignity of procreation. Replies to certain questions of the day”. This proposal are edited by Vatican Congregation for the Doctrine of the Faith 22 February 1987 and by pope Benedict XVI former Cardinal Joseph Ratzinger.

The Instruction is the result of numerous discussion and prepared for lengthy consultations. The instruction does not offer an organic study of Church teaching on human life but does present a gathering of replies to the principles moral questions which have been directed to the Congregation in this field.

Respect for human being in their phase after conception the egg cell, in the preimplantation stadium, embryos and fetus stadium are base six points.

A. Modern science recognizes that the biological identity of a new human individual is already constituted in the zygote which results from fertilization. This scientific conclusion furnishes a valuable indication for discerning by the use of reason a personal presence at the moment of the first appearance of human life: how could a human individual not be a human person?

B. Prenatal diagnosis is licit if the methods utilized with the informed consent of the parents respect the life and the integrity of the embryo and the mother without subjecting them to disproportionate risks. It is on the other hand gravely opposed to the moral law when it is done with the thought of possibly inducing an abortion depending upon the results. One must deny to the State or any other authority the right to link in any way prenatal diagnosis and procured abortion. One must also deny to anyone the right to impose or counsel prenatal diagnosis for the purpose of possibly proceeding to an abortion.

C. Therapeutic procedures on the embryo are licit if they respect its life and integrity and do not involve for it disproportionate risks but are rather directed to its healing. It is on the other hand illicit to perform procedures on human embryos which menace their integrity or individual survival.

D. Medical research must refrain from operations on live embryos, unless there is a moral certainty of not causing harm to the life or integrity of the unborn child and the mother, and on condition that the parents have given their free and informed consent to the procedure. Experimentation on living embryos, whether viable or not, which is not directly therapeutic, is illicit. The corpses of human embryos and fetuses must be respected just as the remains of other human beings. No scientific or commercial practice may be a voluntary accomplice in procured abortion or give rise to scandal.

E. It is immoral to produce human embryos destined to be exploited as disposable “biological material”. Just as condemns induced abortion, so does the Church forbid acts against the life of these human beings.

F. Attempts to obtain a human being without any connection with sexuality through “twin fission”, cloning or parthenogenesis are contrary to the dignity of human procreation and of the conjugal union. Similarly illicit are plans for animal-human hybrids or the gestation of human embryos in artificial or animal uteruses. The freezing of embryos, even when carried out to preserve their life, constitutes an offense against the respect due to human beings. Manipulations to produce human beings selected according to sex or other predetermined qualities are contrary to the personal dignity of the human being, to his integrity and his identity. Such practices cannot in any way be justified on the grounds of possible beneficial consequences for future humanity: indeed every human being must be respected for himself[8].

7. What are the possible solutions in therapeutic or experimental on children practice?

No objective, even though noble in itself, such as a foreseeable advantage to science, to other human beings or to society, can in any way justify experimentation on living human embryos or fetuses, whether viable or not, either inside or outside the mother's womb. The informed consent ordinarily required for clinical experimentation on adults cannot be granted by the parents, who may not freely dispose of the physical integrity or life of the unborn child. Moreover, research on embryos always involves risk, and indeed in most cases it involves the certain expectation of harm to their physical integrity or even their death.

To use human embryos or fetuses as the object or instrument of experimentation constitutes a crime against their dignity as human beings having a right to the same respect that is due to the child already born and to every human person.

“Instruction on respect for human life in its origin and on the dignity of procreation” also says that, in the case of experimentation that is clearly therapeutic, namely, when it is a matter of experimental forms of therapy used for the benefit of the embryo itself in a final attempt to save its life, and in the absence of other reliable forms of therapy, recourse to drugs or procedures not yet fully tested can be licit (…).

The corpses of human embryos, whether they have been deliberately aborted or not, must be respected just as the remains of other human beings. In particular, they cannot be subjected to mutilation or to autopsies if their death has not yet been verified and without the consent of the parents or of the mother. Furthermore, the moral requirements must be safeguarded that there be no complicity in deliberate abortion and that the risk of scandal be avoided. Also, in the case of dead fetuses, as for the corpses of adult persons, all commercial trafficking must be considered illicit and should be prohibited[9].

8. In conclusion, in optical Christian philosophy and Catholic theology, genetics research on children before his birth have dignity, integrity and fully protection, because in every forms human life has feature of human being. Teaching of the Magisterium of the Roman Catholic Church and catholic bioethics of beginning of the life give us serious, fundamental criteria for genetics research on children and on each of us.

Only in this way can the possibility of living and loving with that dignity and liberty which derive from respect for the truth be ensured for the man and women of tomorrow.

This study was supported by the EU project CHILDRENGENONETWORK (Contract No. QLK4-CT-2002-02-02198).

[1] Brody B.A.: The ethics of Biomedical Research. An International Perspective, New York – Oxford 1998, p. 121.

[2] International Ethical Guidelines for Biomedical Research Involving Human Subjects prepared by the Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World health Organization (WHO), Council for International Organizations of Medical Sciences, Geneva 2002, p. 66.

[3] Gustafson J.M.: Theologians and Geneticists. Conference on “Genetics, Religion and Ethics”, Houston, March 14, 1992, (in:) On the New Frontiers of Genetics and Religion, Nelson J. R. (ed.), Grand Rapids 1994, p. 19.

[4] Kraj T.: Scientific progress as a moral problem. Implications in modern genetics, [Computer print, Archive by Authors] Romae 1999, p. 94.

[5] Biesaga T.: Antropologiczny status embrionu ludzkiego, (in:) Podstawy i zastosowania bioetyki, Biesaga T. (ed.), Kraków 2001, p. 101–112.

[6] Nuffield Council on Bioethics, The ethics of prolonging life in fetuses and the newborn. Consultation Paper, p. 9.

[7] Ibidem, p. 17.

[8] Congregation for the Doctrine of the Faith, Instruction on respect for human life in its origin and on the dignity of procreation. Replies to certain questions of the day, (in:) Ethics & Medics. A Catholic Perspective on Moral Issues in the Health and Life Sciences, Sopplement Aprol, 1987, p. 2–3.

[9] Congregation for the Doctrine of the Faith, Instruction on respect for human life in its origin and on the dignity of procreation. Replies to certain questions of the day, (in:) Ethical Issues in Modern Medicine, Arras J. D., Steinbock B., (ed.), 5 ed., Montain View CA 1999, p. 427–428.