Bioethics for the New Millenium
pp. 1-9 in Gabriel, M, Joshua, K., Azariah, J. Current Issues in Bioethics and Environment (Madras Christian College, 2001).
Institute of Biological Sciences, University of Tsukuba, Japan
Author: Darryl R. J. Macer
I am sending this message to participants of the Workshop on New Genetics, Environment and Bioethics, with my warm wishes for a successful conference and a learning experience. I have been blessed to visit Chennai the past three January's and to also visit other places in India. The importance of bioethics continues to grow, and we will be facing many deep questions in the coming decades.
In the 2 December issue of Nature magazine, the complete sequence of human chromosome 22 was announced. You can access it from the Internet. We can expect the rest of the human genome to be sequenced in the coming year, and the era of genetic determinism will be fully here. However, I think the biggest crisis of bioethics will be the environmental crisis of water, sustainable food production, and giving people hope. I am sharing a few thoughts on bioethics below, which I hope will be useful. I welcome feedback from the conference, and hope that you explore many topics in a well argued and structured way.
Bioethics is a broad term that encompasses the environmental, ethical, legal and social implications of agriculture, life sciences and medicine. The rapidity of progress in genetics and genome mapping, spurred by the human genome project, is reforming the whole process of science, and providing new tools for use in technology, but raising many implications for society. This report will make an overview of the bioethical issues being discussed from recent applications of science, including genetic engineering of microorganisms, plants and animals, in vitro fertilization, cloning, xenotransplantation, gene therapy and genetic testing.
Origins of Bioethics
The word "bioethics" comes to us only from 1970 from Van R. Potter in the book Bioethics, Bridge to the Future (1), yet the concept comes from human heritage thousands of years old. We can see discussion of abortion, euthanasia, communication between doctors and patients, and conservation of resources and biodiversity for millennia, in almost all cultures, philosophies and religions. However, the rapid advances in life sciences and the global environmental crisis led to the development of the academic field of bioethics since the 1960s. These included development of life-sustaining respirators in intensive care, organ transplantation, assisted reproductive technologies, and genetic engineering. When combined with the civil rights movements of the 1960s, more people felt they should be involved in the formation of public policy, expressing rights given in the United Nations Declaration of Human Rights.
A set of four principles or ideals have been developed as a common ground for decision-making. They include the autonomy of individuals to make choices, while respecting the choices of others, justice. In all things we do, the ideal is to avoiding doing harm, non-maleficence, and try to do good, beneficence (2). I have argued that these principles all derive from my definition that bioethics is love of life. We can consider the four principles of love bioethics, as self-love (autonomy), love of others (justice), loving life (non-maleficence) and loving good (beneficence). Love is not only a universally recognized goal of ethical action, but is also the foundation of normative principles of ethics (3).
While bioethics is the concept of love, balancing benefits and risks of choices and decisions, it encompasses numerous other fields such as technology assessment, medical ethics and environmental ethics. In addition, there are at least three ways to view bioethics:
1. Descriptive bioethics is the way people view life, their moral interactions and responsibilities with living organisms in their life.
2. Prescriptive bioethics is to tell others what is ethically good or bad, or what principles are most important in making such decisions. It may also be to say something or someone has rights, and others have duties to them.
3. Interactive bioethics is discussion and debate between people, groups within society, and communities about 1 and 2 above.
The principle of beneficence argues that we should progress the development of technology if it will not cause harm or injustice. Biotechnology is the use of living organisms, or parts of them, to provide goods or services. The principle of do no harm has led to both biosafety and socio-economic concerns about genetic engineering. There have been several hundred medicinal products approved for clinical use, since insulin and human growth hormone in 1982. A series of levels of safety was established in the mid-1970s, to minimize risks of harm to the environment and to other organisms from research using genetic engineering, including human beings. In the 1990s we have seen universal use of genetically modified animals and plants as research tools, and for toxicology testing.
By the mid-1980s some genetically modified organisms (GMOs) were released into the environment in small-scale field trials to assess the environmental impact. By the mid-1990s there were certain GMOs that were essentially grown openly as agricultural crops, particularly in China and North America, with European, Australasian, and other Asian countries following, so that by 1997 GMOs were being commercially grown in all inhabited continents of the world. For crops including cotton, soybean, and maize they have already become standard in North America. The advantages of the crops include disease resistance, insect resistance, altered or novel products such as oils, different varieties, and tolerance of adverse soil, water and environmental conditions. Reductions in the use of chemical pesticides are also associated with some of these varieties. However, there are concerns whether the introduced genes might transfer to other species, and whether this might cause harm to those species or adversely alter the ecosystem. This has been called genetic pollution, and scientific experiments found generally the probabilities of adverse events occurring are low, but that this varies between species. Continual monitoring is called for, and food safety tests to monitor allergies and side effects.
Concurrent with the emergence of bioethics has been the modern animal rights movement, which has led to reduced use of animals for toxicity testing and research, as well as even violent protests against research that continue to use animals. Understanding of evolutionary links and the common gene pool has also increased the arguments to regard non-human animals as ethical beings in their own right, a biocentric approach to viewing life. Alternative tests have been devised which may not involve animals, or reduce the number of animals used and the pain and suffering to the animals. Technology has allowed development of cell lines which can be used instead, or genetically modified animals, especially transgenic mice, that have increase susceptibility to develop cancer require less number for tests. Cloning of genetically identical animals to be used for control and test animals can also reduce numbers.
There are nevertheless concerns about crossing species boundaries in genetic manipulation, and whether modern biotechnology has made animals to be regarded more as commodities, tools and bioreactors for producing products than traditional animal husbandry did. Xenotransplants are expected to provide a new source of organs, with humanized hearts being grown in pigs. The safety to humans of hidden viruses and disease is being questioned, but for those who eat meat there would seem to be few more new ethical problems compared to current uses of bioreactors to make products, unless body transplants were ethically conceivable.
Bioethics would argue that all creatures whatever their genes or origin, and especially sentient ones, are fellow creatures which inhabit the planet, and we should not reduce our reverence for life. There have been moves to grant Great Apes (chimpanzees, gorillas, orangutans and humans) equal and inalienable rights, and we can expect this question to face legislatures more in the next century.
Technology and Justice
One of the key principles of bioethics is justice, which argues that the benefits and risks of new technology should be shared by all groups within society and countries. There has been considerable concern that life expectancy is linked to socio-economic inequalities, and as more health care options are moved to the principle of user-pays instead of nationalized health services, these inequalities will be made worse. Environmental pollution is also usually worse in poorer areas because of lack of mobility of groups who live close to waste dumps, water, noise or air pollution. The gap between rich and poor is still getting worse, especially between rich and poor countries.
The resources of biotechnology are genes, which are found in the biodiversity. The Convention on Biological Diversity has given the intellectual property rights to discoveries of new drugs in native species to the country of origin, but with a major exception for any biological materials collected before 1992, i.e. what is already in botanic gardens, aquariums or zoos. Some would argue that no person has a right to ownership of world biological heritage, and it should be open to all. This debate with TRIPPS and the World Trade Organization that called for universal recognition of patents, will intensify in the 21st century. Over half of the genomes that have been fully sequenced have been products of industry research, and while most of the data is shared openly very soon after discovery, selected genes and features are subject to patent protection. Article 4 of the Universal Declaration on the Human Genome and Human Rights accepted by all countries of UNESCO in 1997 reads, "4. The human genome in its natural state shall not give rise to
financial gains." The questions are whether complementary DNA is natural in the spirit of the Declaration, whether a single nucleotide makes something an invention, and what is a just reward for industrial investment in biotechnology.
The other emerging issue is the use of so-called "terminator" techniques to stop the seed from a plant seed being viable in the second generation, so that the farmer cannot grow them. This controls the supply for seed providers (usually commercial). It has been criticized as killing the principle of life itself, but companies argue it is not different to hybrid seeds. The only area it may have strong ethical support is to protect pharmaceutical producing plants that are special products of research, that could be dangerous if growth was uncontrolled. However, there are biosafety questions if the terminator feature was passed to other plants, of the same or different species. From the justice point of view, there is no scientific reason GMOs need to be terminated, unlike hybrids, so several countries, like India have banned import of such seeds. It would also conflict with the ideal that food is a basic human right.
Human Reproductive Technologies
The options that are available for assisting human reproduction mean that genetic parents, social parents and gestational parents (surrogate mothers) may be different persons. Some sperm banks allow the selection of sperm based upon characters of their parents, race, hair colour, educational success, height, weight, and character. Donor insemination is usually performed anonymously from the parents, but in Sweden and New Zealand, children can trace their genetic fathers through record keeping. In other countries generally it is difficult, and in some countries not even reliable records are necessary. This is because of a debate over the right of a child to know their parents versus privacy of the donor. In the case of known donors, in Belgium for example, one can use sperm posthumously after the death of a husband whereas in the UK one cannot.
Embryo freezing has become common place meaning that twins can be born at different times, which could lead to a new type of developmental study. The question of whether to dispose of the excess embryos after the parents have stopped trying to use in vitro fertilization (IVF), to perform destructive research on them until up to 14 days in vitro growth, or donate them to parents who want to implant them, are dilemmas that are usually solved by having the genetic parents plan before depositing. What happens when couples divorce and later want to use, is still unsure and discussed in law courts that come to different conclusions.
There have been a number of arguments expressed for and against surrogacy, but some commercial services are available on the Internet from certain US states. International approaches are needed as persons from Germany and Japan who cannot use surrogacy because of regulations in their own countries, contract the services of US surrogate mothers. While genetic linkage is strong, in terms of the effort a surrogate mother puts greater effort into the birth of the baby, and so in some countries they can change their mind and refuse to hand over the child to the contracting parents. Further questions raised include whether access to these services for reproduction should be government funded, and whether any potential parent can contract for such services.
Human cloning has been banned by Article 11 of the Universal Declaration on the Human Genome and Human Rights, "Practices which are contrary to human dignity, such as reproductive cloning of human beings, shall not be permitted..." There is debate however over what is human dignity, and whether one can really restrict individual liberty for a family that only wants to clone to make a single child. We can expect greater pressure to change policy when mammalian cloning in agriculture becomes safe and efficient.
Genetic tests can be offered to people to confirm medical diagnoses, or to find presymptomatically the risk of developing certain diseases. DNA chips are allowing multiple screening for risks to chemicals, risks of side effects from pharmaceuticals, and risk and age of onset of inherited diseases. It is generally considered that children should not be tested until they can understand the results, and there is in Article 5 c of the Universal Declaration on the Human Genome and Human Rights, "The right of each individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.". There have been laws to protect privacy and against genetic discrimination in many countries.
Prenatal genetic testing allows the genes of the fetus to be tested, which can reassure parents who are at high risk to pass on inherited disorders or chromosomal abnormalities, but is also linked to abortion choices. Abortion is one topic there will never be universal consensus upon, but generally it is legally permitted at later stages for reasons of fetal disease, arguing from the child's best interests. Preimplantation diagnosis with IVF allows 2 day old embryos to be tested and then the healthy ones selectively re-implanted, removes some concern about fetal rights, but still creates division among disease support groups who are concerned about discrimination. As tests become cheaper and wider, reaching all of the population as techniques develop for testing fetal cells in maternal blood, tests are likely to be conducted earlier and more widely.
There has been more written about gene therapy before it has become a successful clinical technique than any other clinical technique in history. It might one day be rivaled by human cloning in that respect. Ethically, somatic cell gene therapy raises few new ethical issues from any nonproven clinical trial, however, in all countries that have used it there are separate ethical review committees for gene therapy because of the powerful image of "genes". There is debate over whether enhancement gene therapy should be allowed, once it is technically safe and effective, but most conclude that if we allow cosmetic surgery than some types of enhancement without medical reason (contrast to immunization) may be ethical.
The debate is intense over germ-line gene therapy, as it is outlawed in the Council of Europe Convention on Biomedicine and Human Rights, signed by over 20 countries in 1996. Other countries have regulated against it, but are debating the question when it might be justified to alter the genes children inherit. There is intense debate that this will lead to human genetic engineering for no medical reason, which some expressing a libertarian view support. The issue is international, as people born with altered genes can move into any country allow with their sperm and eggs. Perhaps it has captured the attention of bioethicists for it will be a science and technology that changes ourselves directly.
As discussed above, most of these issues are hotly debated, and the debate is becoming more cross-cultural and global. Eventually all citizens have to choose which applications of science and technology to use, and society has to decide how much freedom it allows. Let us hope that this conference contributes to the global dialogue, and the All India Association of Bioethics can grow as a loud voice in the International Association of Bioethics, and in our global society.
1. Van R. Potter Bioethics, Bridge to the Future (Prentice-Hall, Englewood Cliffs, 1971).
2. T.L. Beauchamp and J.F. Childress, Principles of Biomedical Ethics. Fourth Edition (Oxford University Press, New York, 1994). p.502.
3. Darryl R.J. Macer, Bioethics is Love of Life (Eubios Ethics Institute, Christchurch, 1998).
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