pp. 367-369 in Bioethics in Asia

Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute

Copyright 2000, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.

F6. WHO Medical Genetics Services and Bioethics

Victor Boulyjenkov.

Human Genetics Programme, World Health Organization, Geneva

It is a real pleasure for me on behalf of World Health Organization to welcome all of you attending this International Satellite Symposium on Medical Genetics Services and Bioethics which is co-sponsored by WHO and to express my cordial thanks to the Organizing Committee and, in particular, Professor Fujiki and Professor Macer for the opportunity to participate in the meeting.

As a result of the recent scientific and technological progress in the biomedical field, especially related to research on the human genome, it is now evident that an international debate on the ethical issues concerning the possible applications of new genetic knowledge into practice, is necessary. Clearly, this subject is of interest from social, ethical, legal, religious, philosophical, medical, technological and educational points of view, and international dialogue is certainly required. To this end, the present Symposium aimed at the problems of medical genetics services and bioethics is very welcome.

Ethics has always been a fundamental concern of the medical profession. Today, however, concern for biomedical ethics is of a different scope and must be seen in the light of the profound social, economic, informational and technological changes which have taken place in what has become a new global environment. Concern for biomedical ethics may even be strongest in public opinion. Public pressure today demands that responsibilities in the field of health should be clearly spelled out and assigned to the relevant individuals, professions, industries and government departments.

The progress of international human genome research will significantly increase the possibilities for the prevention and control of a wide spectrum of diseases, as well as the requirement for medical genetic services and their access. Genetic technology may also soon be applicable for identifying people with genetic risk factors for common diseases, and it is necessary to learn more about the social attitude to this form of genetic testing.

Such progress often evokes fears of control of peoples' reproductive behaviour. Scientific, medical and lay communities should ensure that information and technology will be used to preserve the dignity of the individual. The geneticist's principle of the autonomy of the individual excludes such activities even if they were possible. Core principles are the autonomy of the individual or the couple, their right to adequate and complete information, and the maintenance of the highest standards of confidentiality. It follows that the choices should be made by the individual or the couple and that genetic counselling should be provided in a non- directive manner.

For example, there is increasing awareness that genes of the normal range of genetic variation, which may confer a predisposition or resistance to common disorders, do not themselves cause disease. In fact, most bearers may be completely healthy. Every measure should be taken to ensure that individuals can have tests for such characteristics without fear that the results could be used to their disadvantage, for instance, in limiting choice of employment or life insurance. Information concerning a healthy person's genes should be generally considered as the propriety of the person. Existing traditions for handling data about previous or present diseases are not adequate for the handling of results of predictive genetic testing. If genetic observations are made in persons who are healthy at the time of examination, the resulting information should not be handled in the same way as clinical information on ordinary diseases. The mechanisms of protection for medical information need to be strengthened and affirmed.

Taking this into account, the World Health Organization plans to monitor developments of human genome research in order to draw up a policy on this matter, especially with regard to its ethical and social aspects. One of the ways to avoid the misuse of information is to convene discussions at different levels in order to establish a firm understanding of actual and potential applications of new genetic technology.

Recent interest concerning the developments in cloning was expressed by WHO Member States at the 50th World Health Assembly who stressed the unprecedented ethical implication of such a genetic procedure. In the resolution adopted by the Assembly, it was stated that the use of cloning for the replication of human individuals is ethically unacceptable and contrary to human integrity and morality.

In this resolution, the delegates recognize the need to respect the freedom of ethically acceptable scientific activity and to ensure access to the benefits of its applications. However, they also recognized that developments in cloning and other genetic procedures have unprecedented ethical implications and that related research and development should therefore be carefully monitored and assessed, and the rights and dignity of patients respected.

There is, therefore, a great need for community education in this domain. Ethical problems in medical genetics should, in fact, obviously be considered as an integrated part of general bioethical issues whose ethical standards are indispensable for safe and effective health care. Guidelines are also needed to ensure that health services are accessible and acceptable. WHO will foster international cooperation on these issues and take the necessary steps to formulate a statement of consensus.

However, countries differ on social, religious and ethical issues. The acceptability of some genetic knowledge is decided on general social and medical grounds, rather than on a genetic one only, and a genetic service can operate only within the framework of such general decisions.

Efforts must be made to propose and harmonize safeguards worldwide so that such inequalities are not aggravated, that the safety and rights of all individuals and communities are adequately protected, and that a proper balance is achieved between their rights and responsibilities.

Genetics services should be provided in the contexts of premarital health visits, family planning, preconceptional care, prenatal care, paediatric and adolescent care, and adult care. This approach is in line with the concept of primary health care (PHC) which has been developed by the World Health Organization. The core principles of PHC are concerned with equity, efficacy, effectiveness, community participation, and prividing possibilities for the improvement of health and well-being of populations. Basic guidelines of genetic services are illustrated in Table 1.

The problem of access and inadequate services is the most significant social-ethical issue in human genetics today. A few societies have the economic, professional, and technical resources to approximate or reach the population's level of need for genetics services. Many more societies have the ability to engage in a long-term process of develping the resources necessary to ssign an appropriate priority for genetics services among other health care needs of a population. Still other societies are so beset by conditions of war, famine, poverty, and geographical isolation that their capacity to respond to all basic health problems, including those related to medical genetics, is severely limited.

In setting priorities for genetics services, it is important to remember that the majority of infant and young adult deaths on a worldwide basis have non-genetic causes: poverty, infection, malnutrition, violence, laqck of basic medical care. These problems must be resolved. The principle of justice requires that services should not be rationed on the basis of ability to pay. A national health care system that provides essential care for all, regardless of ability to pay, is the most ethical approach.

Although many countries do not have the resources to perform genome research, it is important that all of them have the possibility to participate in social and ethical discussions, as well as be informed about the transfer of technology. A number of international organizations, including the World Health Organization, could play a catalytic role in supporting international discussions on these topics.

A great number of committees, advisory groups have now emerged and many guidelines and reports have been produced on specific biomedical issues. In dealing with ethics, the World Health Organization will not duplicate what has been done, or is being done, in existing national or regional forums, and by international bodies such as UNESCO or the European Union. The involvement of the World Health Organization in ethics will be directly derived from its global mission, its inclusive vision of health and its responsibility for coordinating international health action.

It is the obligation of the World Health Organization to call attention to the ethical issues emerging from health policies, technologies and practices. It must help clarify these issues and it must take a public stand on them. It will assist in developing an informed public opinion. It will show the way to political leaders, public authorities and health professionals, to enable them to discharge their responsibilities fully, in response to the concerns and expectations of the people, by duly integrating ethics in all public policies and standards related to health and international health cooperation.

As a first step, it has been decided to build up WHO's involvement in ethics in the whole area of reproductive health and more specifically on the following ethical issues:

- quality of care as a determinant of equity in access to and use of reproductive health services

- medically assisted procreation, its ethical aspects, genetic implications, potential applications, risks and abuse

- confidentiality of medical care and data as an ethical and public health issue

To this end, the WHO Human Genetics Programme has initiated draft Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetics Services, the second revision of which will be held in Geneva in December this year. I therefore consider this meeting as a perfect setting to obtain the Asian/Pacific viewpoints on the problems of medical genetics services and bioethics.

I hope, therefore, very much that our present discussion will be concerned with reviewing some ethical regional problems in medical genetics which might be adequately reflected in the revised Guidelines which could help countries in their policies related to genetics services.

I thus wish you a very fruitful discussion and look forward to receiving your recommendations.

Ethical Principles Applied to Genetic Counselling

Respect for persons and families, including full disclosure, respect for people's decisions, and accurate and unbiased information (autonomy).

Preservation of family integrity (autonomy, non-maleficence).

Full disclosure to individuals and families of all information relevant to health (non-maleficence, autonomy).

Protection of the privacy of individuals and families from unjustified intrusions by employers, insurers, and schools (non-maleficence).

Information to individuals and families about possible misuses of genetic information by institutional third parties (non-maleficence).

Informing individuals that it is the individual's ethical duty to tell blood relatives that the relatives may be at genetic risk (non-maleficence).

Informing individuals about the wisdom of disclosing their carrier status to a spouse/partner if children are intended, and the possibility of harmful effects on the marriage from disclosure (non-maleficence).

Informing people of their moral duties to disclose a genetic status that may affect public safety (non-maleficence).

Unbiased presentation of information, insofar as this is possible (autonomy).

Non-directive approach, except when treatment is available (autonomy, beneficence).

Children and adolescents to be involved in decisions affecting them, whenever possible (autonomy).

Duty to re-contact if appropriate and desired (non-maleficence, beneficence, autonomy).


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