pp. 66-69 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.
2.1. The Relevance of Bioethics in Malaysian Society
Chee Heng Leng.
Universiti Pertanian Malaysia, Malaysia
This is a paper which should rightly be presented in Malaysia, because it argues for the need to increase awareness on bioethics in the country. Presenting it at an international conference like this one, however, is useful in that it provides an insight on the situation of bioethics in Malaysia.
Malaysia is often touted as one of the second echelon economic tigers of the Asian region. Since 1989, its economy has grown at an average rate of 8.00%. If you have been to Kuala Lumpur recently, you can see that it is a hive of construction activity. Our Prime Minister has proudly pointed out that the cranes at the construction sites are a symbol of our progress. The environmentalists, however, are doubtful.
Indeed, economic growth and development has brought with it a chain of environmental disasters. The Highland Towers tragedy where a condominium block fell over, has been traced to a blatant disregard for environmental factors -- the clearing of a hill over the other side, construction without regard to the natural drainage of the site, and so on. In the past several years, highways have caved in, although in spite of this, more highways cutting across highland areas and hills have been planned. Currently, we are facing our most serious air pollution problem, caused by the burning of Indonesian forests, but compounded by local sources of air pollution. One may be excused in thinking that environmental ethics does not exist in the country.
Yet, inherent in the cultural heritage of Malaysia's peoples -- the Malay, Chinese, and Indian -- is a deep respect for the environment, for the balance of nature, and for life. Even more so, the culture and way of life of the indigenous peoples of the region is built upon principles of environmental conservation. Along the road of development and the pursuit of material gains, we have lost our sense of this heritage.
Changing Disease Profile, Increasing Incomes
Environmental ethics therefore is one area which needs attention. Let me now focus on the changes in the health status of Malaysians and developments in the health care system in order to try and identify the role that bioethics should play.
Although Malaysia is a developing country, and of the Third World, its health indicators approach those of developed countries. For example, in 1995, its infant mortality rate was 10.5 per 1,000, while life expectancies were 74 years for women, and 69 for men (Seventh Malaysia Plan: 539). Chronic diseases are a predominant feature in its disease profile. Since the 1970s, cardiovascular disease has been the leading cause of death. In a recent national nutritional survey (jointly carried out by the Universiti Putra Malaysia and the Institute for Medical Research, and also including myself), even rural populations were found to have significant problems of overnutrition such as obesity, hypertension, and diabetes, although problems of undernutrition remain.
Decreasing death rates, increasing life expectancies, and the increasing importance of chronic illnesses, acting in tandem with increasing incomes, have led to a surge in the demand for health care in the last 15 years or so. This kind of situation indicates a potentially strong market for health care technology, including reproductive and genetic technology. Although reproductive technology such as in-vitro fertilization is already in existence, and genetic screening and therapy on the horizon, yet the bioethical debates relating to genetic manipulations have yet to make an appearance in Malaysian society.
Health Care, Health Insurance
In Malaysia, health care is provided by two sectors, the government and the private sectors. While there has always been a large pool of private general practitioners in the urban areas, the government has been the main provider of health care in the rural areas through its wide network of rural health service. Until recently, the government has also dominated the provision of hospital care, with a small presence of philantropist, not-for-profit, charity concerns. In the last 15 years, however, the impact of the increasing demand for health care, fueled by the rise in incomes, has been felt primarily in the private hospital sector. Within ten years, between 1980 and 1990, the number of private hospitals and nursing homes more than tripled, from 50 to 174, and in 1994, there were 193 private medical institutions in the country (Ministry of Health, Annual Report, various years). The growth of private health services is not only in absolute numbers, but also in relation to government health services. In 1980, private hospital beds constituted about 5% of all hospital beds in the country; ten years later this figure has tripled.
Low government funding for health care has also contributed to the tremendous growth in the number of private hospitals. Government spending on health was 6.9% of the national budget in 1976, 7.0% in 1980, 5.5% in 1990, and 5.2% in 1994. In 1986, the government health budget was 2.1% of the GNP, in 1990 it was 1.7%, and in 1994 it was 1.4% (Ministry of Health, Annual Report, various years).
Related to this low governmental expenditure is the large disparity between the remuneration of doctors and specialists in the private and public sectors, which together with other disgruntlements with service conditions, has resulted in the exodus of skilled manpower out of the public sector into the mushrooming private sector. In the ten years between 1980 and 1990, the percentage of doctors in the private sector increased from 47% to 57%, although this increase has somewhat stabilized from 1990 to 1994 (Ministry of Health, Annual Report, various years).
Charges for private medical care have risen. Nevertheless, charges in government hospitals and clinics are still nominal, acting as a floor price to keep private medical fees at a reasonable level. This is expected to change, however, with the privatization and corporatization policy of the government.
Although the privatization policy was announced in the early 1980s, it only affected the health care sector in the early 1990s, when the National Heart Institute was set up as a corporatized entity to replace the Cardio-Thoracic Unit of the Kuala Lumpur Hospital, which was facing an acute problem of specialists leaving for the more lucrative private sector. At the same time, hospital ancillary services as well as the national drug procuring, distribution, and production centre were also privatized.
The government sees the corporatization of government hospitals as a way to stop doctors and specialists from leaving government service. Plans are now afoot to corporatize all government hospitals from big district hospitals upward, and to set up a national compulsory health insurance scheme to finance health care.
The expansion in private health care will doubtless give rise to ethical questions related to the acquisition and use of medical technology, the practice of defensive medicine, medical treatment choices, etc. The institution of compulsory health insurance, in the fee-for-service system that is currently existing, will also lead to spiraling health care costs, opening up the field for the growth of private insurance.
Indeed, with the impending structural changes in the health sector, the private health insurance industry is poised to play a bigger role than they are playing now. Genetic testing and screening, and discrimination based on the outcome of these tests will soon become urgent issues. If private insurance makes inroads into the health care sector, issues of privacy and control over the genetic information of individuals will come to feature significantly, as should efforts to legislate against genetic discrimination in health care and health insurance eligibility.
Genetic Discrimination in Employment
Another feature of Malaysian society which renders it extremely vulnerable to impact from discriminatory practices arising from the availability of genetic information is the absence of any legal protection from discrimination on the basis of disability. While in the United States, for example, the American Disabilities Act which protects against discrimination on the basis of disability was extended to protect individuals from genetic discrimination in employment; in Malaysia, there is no such legislation.
In fact, even the notion that disabled individuals should not be discriminated against in getting employment is scant in existence. Unskilled women workers, for example, are often employed only after a physical examination to determine that they are not pregnant, and sometimes to determine that they are not suffering from an illness such as asthma. Employers do not have to give reasons for not employing any particular individual. The unions are relatively weak; in any case, only about 10% of the labour force are unionized. Under such circumstances, Malaysian workers are especially vulnerable to practices of genetic discrimination if and when such technology becomes available.
Multi-Media Super Corridor
Yet one other development in Malaysia makes it an imperative to raise bioethics awareness in the country. This is the priority that the government has placed on the development of information technology as part of the strategy for meeting the challenges of international globalization and trade liberalization policies. This new direction in economic policy has taken form in the conceptualization of the Multimedia Super Corridor (MSC), described as the base from which the country will launch into the era of information technology.
The physical realization of the MSC is a 15 kilometre by 50 kilometre high-tech zone stretching from Kuala Lumpur to the new international airport in the south, and includes the new developments of Cyberjaya and Putrajaya (future administrative capital). Here, the full promise of multimedia is to be realized through special cyberlaws, policies and practices.
Among the seven flagship applications formulated to be the focus of the MSC are the multipurpose card and telemedicine (which together with electronic government and smart schools form the Multimedia Development Flagship, while the other three -- borderless marketing, research and development cluster, and worldwide manufacturing web -- are categorized under the Multimedia Environment Flagship Applications). The smart card is envisaged to be a card containing all the information about an individual, including his or her medical record. Presumably, if the person's genetic information is available, it would be put on the card as well.
Of course, at this point, everything is still at the stage of planning and experimentation. Nevertheless, it is not difficult to foresee the problems that may arise from electronically stored genetic information. Questions that should be raised concern who will have access to such information, and an individual's right to privacy. Simultaneous with the conceptualization of the smart card, there should be debate on the legislation that is necessary for the protection of an individual's civil liberties.
Current State of Bioethics
The part of bioethics that is most developed in Malaysia currently is that which relates to biosafety. A national advisory committee on genetic manipulations, comprising representatives from the Attorney-General's office, government ministries, the universities, as well as non-governmental organizations, has been set up under the Ministry of Science, Technology, and Environment. There are at present no specific laws on genetic manipulation, or genetically modified organisms, but the advisory committee has formulated national guidelines for the release of genetically modified organisms into the environment (NACGM, 1996).
The addressing of biosafety and labeling issues in relation to the production and importation of genetically modified products, and environmental safety issues with regard to genetically modified plants, microorganisms and animals, are in a sense overdue in Malaysian society. This is not only because biotechnological research is carried out in various institutions in the country, but in the current thrust toward market-oriented research and development, biotechnology has been targeted as a priority area. Furthermore, insofar as Malaysia is bound by international trade agreements, foods, pharmaceuticals, or other products that have been genetically modified may be brought into the country.
Besides biosafety, however, no committees have been established to address other bioethical issues. In the medical research institutions, there are ethics committees governing research involving human subjects. Nevertheless, issues relating to access to genetic information of an individual, genetic discrimination, and genetic manipulations of human cells have not yet been addressed at the national level. This is a serious gap because, although there is no human genome project in the country, it will only be a matter of time before the science or its applications find their way here.
Civil Society And Bioethics Education
The national vision, as embodied in the Vision 2020 statement, encompasses the goal of reaching developed nation status in the year 2020. Although the main aim is an economic one, the Deputy Prime Minister has also introduced the notion of building a civil society. This will essentially mean broadening the democratic space, encouraging public debate on state issues, and hopefully, also allowing for people's participation in decision-making.
If the leadership is serious in realizing this, then the development of bioethical thinking should find in it a ready springboard. Genetic engineering and biotechnology is already set to become a major component of Malaysian research and development; the discussion of its ethical, legal and social implications should not be confined to a small group of scientists and policy makers. In anticipation of its onslaught, society as a whole should be aware and prepared.
In this context then, it would be important to begin and advance the course of bioethics education in the country. Bioethics education should incorporate public education, formal education in the schools and universities, as well as education aimed at professionals. It should aim at discussion of issues, as well as critical thinking about them.
To be broad and far-reaching, there should also be an emphasis in promoting a basic understanding of genetics and the life sciences among non-scientists and non-science students, which would enable them to respond to the new genetic technologies with knowledge, not with fear.
There are many compelling reasons for public education in bioethics, one being to enable the public to participate in discussions pertaining to these issues which affect society as a whole, and to have a say in the formulation of policies, laws, and guidelines. It will also better enable Malaysians to participate in the bioethical debates at the international level and to have a say on issues which have a global impact.
It is also important for particular communities to understand the bioethical issues so that they are able to participate fully in setting up the necessary legal and ethical guidelines necessary to avert abuse. This is particularly so in a multi-ethnic, multi- religious and multi-cultural society such as Malaysia's where varied cultures and religions may give rise to a range of sensitivities and ethical perspectives.
Chee Heng Leng, 1996. Ethical and social issues in genetics: the need for a national educational programme. Paper presented at the Second National Congress on Genetics, Genetics into the Next Millennium, 13-15 November 1996, Hotel Nikko, Kuala Lumpur.
Malaysia, 1996. Seventh Malaysia Plan, 1996-2000. Economic Planning Unit, Prime Minister's Department, Kuala Lumpur.
Ministry of Health, various years. Annual Report.
Ministry of Health, Malaysia, Kuala Lumpur. National Advisory Committee on Genetic Manipulations (NACGM), 1996. Guidelines for the Release of Genetically Modified Organisms (GMOs) into the Environment. NACGM, Ministry of Science, Technoogy, and Environment, Kuala Lumpur.
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