Ethical Dilemmas in Medico-genomic Research Need Open Debate

- Chandra Jeet Singh

Department of Medical Mycology, Vallabhbhai Patel Chest Institute, Delhi University, Delhi-110 007, INDIA


- N.S. Kavitha

19 B+C, SSL Brindavan, 4th Cross Street, Andal Nagar, Adambakkam, Chennai 600 088, INDIA.


Eubios Journal of Asian and International Bioethics 12 (2002), 147-149.

Science has made tremendous advances during the last century. Its promises have attracted and excited the public, but this exposure to the people gaze has come at a price. The present article highlights the ethical, legal and social issues associated with developments in science particularly biomedical science and genomic research. Question is being asked, whether we can afford smuggling in the ethics in lieu of developments in science and technology?


We have entered the new Millennium and Science and Technology had been very much in news over the past hundred years. This century has seen revolutionary advances in Physics, Chemistry, Mathematics, Biology, Electronics, Space Science, Information Technology and many other areas. The atomic age came with the nuclear explosion of 1945; the modern Electronics age was borne with the discovery of transistor in 1947 and then of laser; the space age was launched by Sputnik in 1957 and the age of modern Biology was ushered in with the discovery of double helical structure of DNA in 1953. The large and continuing growth of population is a result of advances in Medical Sciences and the ability to enhance food production on the scale needed-both directly attributable to Science and Technology.

It is important to point out that with the spectacular advances in Science and Technology, many questions have started to come up in pressing, and sometimes in very inconvenient fashion. Initially these were related to the implications of massive scientific efforts in areas of sophisticated weapon systems, and more recently their use in various areas of terrorism and violence in society. The development of atomic bomb was an honest and genuine conviction but its use over Japanese cities of Hiroshima and Nagasaki awakened the social conscience of science in a remarkable fashion. In the similar vain, unprecedented breakthroughs in biomedical research have made both scientists and science managers to thrash out issues that new developments have brought up. In the broad spectrum of scientific advances made in the last century, it would not be possible in an article like this to cover in detail every area of research and development, hence, we will restrict this to the areas of Biomedical Sciences and Biotechnology, which are the most visible faces of all modern sciences today. The canvas of researches made in these sciences itself is too large and therefore, I would point in very broad brush strokes only the selected few latest developments. The main objective, however, is to project on the ethical, legal and social issues that are vaulted into prominence, promoting intense public debates and deep reflections by diverse bodies.

Ethical choices in research are everywhere. Think of the constraints on biomedical research with animals. The historical work by Frederick Banting and Charles H. Best with dogs led to the discovery that insulin controls diabetes-but in the first ten tests the animals died. That breakthrough has enabled millions of people to live, including many of ours' parents, wives and husbands. The cardiac pacemaker, microsurgery to reattach several limbs, and heart, kidney, lung, liver and other transplants are possible because of animal research. Further, animal experimentation has led to various vaccines against polio, measles, mumps, whooping cough, rubella, diphtheria and in developing drugs against dreaded diseases like Alzheimer's disease, Parkinson's disease, schizophrenia, cancer and AIDS etc (1). Today, however, each experiment would be slowed by stringent government regulations and threatened by incendiary criticism, even violence, from animal-rights activists (2,3,4). The animal rights movements viz. Animal Liberation Front (ALF) and People for the Ethical treatment of Animals (PETA) have held the West's biomedical research community under seize for years. PETA's leadership insisted that, "animals are moral equivalent of human beings and any differentiation between people and animals constitutes 'speciesism' as unethical as racism" (5,6,7). Says PETA's co-founder and director Ingrid Newkirk, "there really is no rational reason for saying a human being has special rights." She has been quoted as saying that if her father had a heart attack, "it would give me no solace at all to know his treatment was first tried on a dog" (1,8). The movement spearheaded by Minister of Social justice and Empowerment, Mrs. Menka Gandhi in India to the cause of anti-humane absurdities done to animals. True, animals were sacrificed to save people. Many forever question whether there wasn't a better choice?

Recent discoveries have posed even greater ethical challenges. The latest from genetic engineering, the clone, a Finn Dorset sheep called Dolly, a feat of scientists at the Roslin Institute and PPL Therapeutics, near Edinburgh, in February,1997 (9) sent tremors round the world. More than the scientific breakthrough, it had been the potentially dire consequences flowing from the marvel that have made presidents, scientists and moralists jittery. Reaction had been sharp and quick world over, when Dr. Ian Wilmut, creator of Dolly himself admitted that the technique he used on the animal could be applied to humans. He asserted that a human embryo, produced by the method, by which Dolly was cloned, could be used to treat cancer and other life threatening diseases (10). He ruled out 'copying' a human being, but an adult human cell could be fused with an egg to create an embryo in exactly the same way as animals like Dolly, the sheep are 'grown' (11). But now after the development of Tetra' it is only a matter of time, which would enable genetic engineers to xerox human beings. We scientists must concede that fusing a cell from a human adult with an egg and growing an embryo to be used to treat humans, "raise issues that would have to be considered by biologists and those dealing with ethics." Dr. Wilmut's daring 'possibility' is the concern of the entire world.

Then U.S. President Bill Clinton asked The President's Bioethics Advisory Commission to carefully review the ethical and legal issues associated with the development in technology (12). He even asked the administration to deny federal funding for human embryo research. The line of thinking of the American Government had been as to whether or not cloning of humans would be possible, but even a try in that direction is unethical. The same line of argument was taken up by the Vatican when it contended that people have the right to be borne "in a human way " and not "in a laboratory." The church believed that attempts at multiplication, outside a sexual context as "contrary to morality in as much as they contrast with the dignity both of human procreation and of conjugal union." Every different way or methodology is not acceptable because it contradicts above all "the creative plan of God and also it offends the dignity of the person and of marriage" (13,14,15). While appealing to all the countries to quickly pass laws, prohibiting human cloning, the Vatican also depreciated research that sought to alter animal species, in an obvious reference to the cloning experiment in Scotland. The British Nobel winning physicist, Prof. Joseph Rotblat warned that the experiments of Dr. Ian Wilmut represented, "science out of control." In his words," such sensitive genetic engineering could result in a means of mass destruction." The scientist asked for the setting up of an international ethics committee to monitor developments.

More recent discoveries can pose even greater ethical challenges. Stem cell research is set to become a whole new branch of biology, rewriting the book of human development and enabling physicians to one day create blood and tissue transplants of any variety or to revive brain cells in victims of Parkinson's disease (16,17). Harold E. Varmus, the director of the U.S. National Institute of Health said the, "unprecedented breakthrough" with human embryonic stem cells could revolutionize the practice of medicine. Growing tissues to repair damaged hearts and other organs, for instance is one likely application. The unqualified success story of a team of University of Washington scientists working at the Seattle Biomedical Research Institute (SBRI), Seattle of growing the blood producing stem cells in the laboratory would found applications in genetic research as it would enable scientists to introduce normal genes into the stem cells of patients suffering from diseases known to be caused by single mutated genes, and then multiply these 'improved' stem cells. The newly engineered blood stem cells then will carry the corrected genes indefinitely. But Richard M. Doerflinger of the Committee for Pro-life Activities of U.S. National Conference of Catholic Bishops' has urged caution, because stem cells "involve the creation and destruction of human embryos." Balancing the potential benefits of the technology against the moral issues it raises about what constitutes life, Arthur Caplan, the director of Center for Bioethics at the University of Pennsylvania in Philadelphia concluded, "we need judgment …we need virtue and public accountability to make the right trade-offs"(4).

That issue is: Do human embryonic stem cells, which are close cousins to a fertilised egg, possess a special moral status? So far, in the legal opinion of U.S. and U.K. governments, the research should be allowed to continue. But ethical debates will be open for a long time, as we have seen in the series of country policies announced in the past two years. The National Bioethics Advisory Commission for example, through its reports and recommendations has allowed the use of cadaveric fetal material and embryos remaining after infertility treatments. The report also addresses requirements related to the means of ensuring appropriate consent of women or couples who donate cadaveric fetal tissues or embryos remaining after infertility treatments; the need for restrictions on the sale of these materials and the designation of those who may benefit from their use; the need for ethical oversight and review of such research at the national and international levels; and the appropriateness of voluntary compliance by the private sector (18,19). Even more later research on transforming neural stem cells to form blood cells as well as their normal function, at the University of Washington at Seattle, perhaps would provide better solution to this ethically sound question because unlike human embryonic stem cells, neural stem cells have no special moral status. Inducing them to transform into blood cells would also provide huge opportunity for future therapies (16,20).

The most current issue that had been the center of debate among the scientific community is the Human Genome Project, the unveiling of which in February 2001 separately by J. Craig Venter of Celera Genomics, a commercial upstart and by Sir John Sulston of Public funded Sanger Centre is a revolution with significant implications for medical research around the world including India. It marks a scientific milestone, which will transform biology from being a descriptive science to a predictive one. In the words of then U.S. President Bill Clinton, "deciphering human genome would give science an immense new power to heal by attacking disease at its genetic roots". In the similar vain, "Man now has caught a glimpse of an instruction book previously known only to God" said Dr. Francis Collins, Director of the National Human Genome Research Institute (21). It would provide a better understanding of the diseases and development of gene-based therapeutic methods. Prior information would also enable the individuals to take appropriate measures such as a change in diet or life-style to ward off the potential dangers. . It would take us from the era of drug-based curative medicine and vaccine-based preventive medicine to the era of predictive medicine. Predictive medicine is likely to make our lives complex, raise ethical issues and increase our anxiety. Prior information gathered to predict the vulnerability of individuals to diseases may lead to discrimination in employment, promotion or services like health care and insurance. Gene discrimination could, thus, join the list of other forms of discrimination in the modern world.

The US has already issued an order forbidding genetic discrimination against employees following the report jointly prepared by Department of Labour, Department of Health and Human Services, Equal Employment Opportunity Commission and Department of Justice (22). But for rest of the public, there is no such protection. American doctors have already perfected a technique by which people can determine the sex of their children. In India and China, where there is a strong preference for having boys, the gender selection techniques are likely to become a lucrative business. Already, the preference for boys has placed undue stress on the traditional families in these countries.

If widely accessible, a technique that manipulates natural selection could engineer vast social change not only in Asia but also throughout the world. The release of human genome sequence data will accelerate this process.

That is not all. Advances in genetics have allowed science to improve on natural selection. New techniques may remove or add genes to a hereditary line, screen out congenital defects, identify and eliminate the causes of many diseases and improve the overall genetic make-up of any clan. This has raised the spectre of eugenics, the practice of selective breeding to create a more desirable race- a concept, which captivated Adolf Hitler during the 1930s and 1940s. What if, a terrorist like Osama Bin Laden, decided to have all children in his own image with hopes of ruling the world? Science fiction seems to have suddenly shot out of books into reality.

The poorer nations have something to worry about. Today genetic information is patented. Will profit seeking firms price the genetic medicine out of reach of such countries. Already, firms are patenting genetic information of plants and animals found in third world countries. The future could thus be a dangerous place in which the poor have no place at all. Further, if genes for intelligence are put in the people of one country, it might just mean enslaving of the rest of the world. The consequences of genetic research are thus frightening indeed.

Ours is no weepy-eyed, sentimental commitment. When individuals and societies make meaningful choices, deep values inform them and reliable knowledge frames them. Yet science, as Einstein noted, "offers no moral foundation for the personal conduct of life." Scientists and ethicists together must join with all citizens to fathom more fully how to use knowledge wisely and judiciously. Certainly, the scientific community must pay much more attention to the ethical considerations than ever.

Openness in public debate, no less than freedom in science, is essential to social progress. As Thomas Jefferson wrote, "Liberty…… the great parent of science and of virtue;…….a nation will be great in both, always in proportion as it is free." But the question for some people is: whether the freedom of science must be constrained because of the ethical risks inherent in what may be a Faustian enterprise. On one side of the issue, J.D. Watson, the co-discoverer of structure of DNA argues," Never postpone experiments that have clearly defined future benefits for fear of dangers that can't be quantified." Regulatory criteria must be created that will enable both science and ethical society to flourish (4).

Economic perspectives criss-cross the ethical ones. Global markets and taxpayers' money or - the lack thereof - lack investment in science. What ethical calculus helps decide how much of the research pie to allocate to malaria, to cancer, to rare genetic diseases? When research pays off, new treatments- kidney dialysis, organ transplants, a vaccine for AIDS- are always expensive at first. Who pays and who benefits? The inevitable rationing of resources for medical research and healthcare must be ethically sound. It must always be a transparent process, open to reasoned change as society clarifies its ethical choices.

Our values illuminate the perplexing human choices posed by exploding knowledge. Welcome the knowledge - but don't just smuggle in the ethics. It must no longer be as the English physicist John M. Ziman remarked, "smuggle them in from private life, from religion, or from sheer humanitarian sympathy."


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Note: Part of this manuscript was presented at 5th World Congress of Bioethics held at Imperial College, London 2000.

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