Hope and Fear in Genetics

- Vijay Rajput, MD.fACP
Robert Wood Johnson Medical School, NJ, USA
E-mail: rajputvk1@home.com
Eubios Journal of Asian and International Bioethics 12 (2002), 72-74.


Those of us who write, read or talk about genetics and biotechnology inevitably encounter a barrage of legal principles under various guises that seem to suggest ways that the legal system ought to deal with advances in genetics. We must worry, we are told, about such things as biodiversity, the precautionary principle, the principle of future generations, the prevention principle, the common heritage of humankind, economic analysis, equal rights, privacy, and rights to information. Not only we do not know really what these things are- and, from the look of things, neither do those propose them-but their application to genetics obviously is not easy

Genetics revolution will likely to alter the way we carry on in business and our personal lives.

It will also play on the well-known slogan; will bring good things to life, literally. Through genetic manipulation we can hope for more nutritious and flavorful food that are easier to grow. This genetic revolution is unidirectional; in other words, the consequences of increased genetic knowledge and technology are irreversible. Thus, once we permit an activity to go forward, such as introducing a genetically altered plant or animal into the environment, we do so in perpetuity. It all depends on the choice that we, as society (in the large sense, including our neighbors around the globe), make. Although still in its infancy, biotechnology has already introduced before courts and tribunals worldwide such controversial issues as DNA typing, reproductive technologies, and patenting animals and genes.

In no other area of biomedical research there has been a greater concern for ethical issue than in the field of human genetics. It has also led to great deal of concern about our ability to handle the information derived. The knowledge about human genes and genetic diseases prior to fifties was so poor that there was hardly any genetic research or progress. There has been veritable explosion in knowledge that has culminated in Human genome project, gene therapy and genetic engineering. The human genome project (HGP) has also precipitated unprecedented concern for intellectual property rights. Recent experiments on cloning of sheep bring human cloning into realm of possibility, raising ethical, legal and social issues as important aspect of HGP. This will bring some guidelines or legal concern with least amount of ambiguity. It will also need to deal with special concern to curtail the potential harm without clamping a moratorium on research and service in this field.

Each of us is unique individual. Each of us has genome, consisting of three billion DNA bases inherited from our mother, plus and additional (very similar) three billions from our father. Each of us differs in DNA sequence by about one base in every thousand, for total of between three and six million differences. These differences underlie our uniqueness and individuality. It is important to make a point that there are other contributing factors as well, which are non-genetic. So it is necessary to be extremely cautious and alert to "genetic determinism", a trap of assuming that more is due to genetic inheritance than in fact is.

Some area of genetic medicine such as the effort to identify simple genetic etiology for complex disease and traits will plainly begin to fall away during next few years. One very important role of society and us is to think about how allocation of resources, crafting of laws and education of children and professionals should be used to prepare for such a future.

Ethical and judicial system can be "institutional criticism" examining how the establishment and maintenance of different institute puts each society in a position to cope with issue in health and science. However history is very poor in this regard. Bioethics and law in this field is scarcely 40 year old. American and European law has grown out of reaction to big scandals, such as chronicled at the trials in Nuremberg, Tuskegee, and Henry Beecher's study of abuse in research. Bioethics knows how to react to Dolly the cloned sheep. It is not so great at predicting or laying the ground for new science or paradigms shift in medicine. It is clear from the public reaction to Dolly, and other scientific claims in the areas of developmental and molecular genetics. The danger is that when scandals about Viagra or Prozac or cloning finally grow tiresome, the public's uneducated fear is replaced by untutored acceptance of new technology. Without reconstruction of the institution of society to meet new challenges, there is little chance we will be prepared for the innovations that are coming. (1) Today's public fears of genetic diagnosis assume that the use of such technologies will be alien, impersonal and technologically difficult.

We will see many ethical, legal, and social implications of genetics in the future. Genetics involves shared familial information, and the diagnosis of one person has direct implication for his or her family members. It is extremely important that patients and research participants understand what information and future predictive insights about them may emerge from genetic studies, particularly when the latter involves genetic testing or screening for multigenic and predisposition diseases. What do you tell someone who test positive for a disease-associated allele when you can only be vague about its clinical implications? What responsibility do physicians or counselors have in the communication of risk information to the patients when the risks themselves are poorly understood? Can genetic information be "owned" and, if so, by whom and under what circumstances? These and other issues that arise from genetic information will challenge the courts and will be exacerbated, as we get better at "reading" and interpreting the content of genomes. The question of the "ownership" of DNA, still more the notion that genetic copies which belonged to human beings can be said to have propriety value, has already been well rehearsed in the debates over organ donation and the patenting of human genes. These issues are complicated by the discussions about the need to "reimburse" the population groups who have donated the material.

The problem raised directly in the academic literature but also indirectly through court decisions. (2) It involves the somewhat counter-intuitive notion that private property rights can impede, rather than encourage, innovation. This concern arises because of the way genetic information yields its effect on biological system. Granting private property rights to minute parts of this layered and interconnected system creates potential for the tragedy of the anticommons (inhibiting effect of patent protection). We may so split up rights to use genetic information that it will become prohibitively expensive for anyone to conduct meaningful research. So while our patent system was designed to promote through the granting of property rights (to prevent a tragedy of the commons in which no one would invest in research without having private property rights), its effect on the ownership of genetic information may actually be to stifle research. (3)

The essential belief of community is that the legal system can respond to any harm threatened by a new technology before that harm becomes severe. We can allow science to move the economy and our lifestyles forward. Only problem to that is biotechnology advances move far more quickly than the legal system. In fact, the slow pace of change is one of the inherent limits on the judicial power. Given that neither science nor the legal systems have proven they will able to prevent the harm that might result from gene therapy or genetically modified food product; this fear is far from reasonable. Nevertheless, having a reasonable basis for concern does not amount to a justification for paralysis. Genetics and genetic technology, whether anyone likes it or not, are reality. The real question is how to control it so that it is most likely to benefit us. It is too late to argue that we should abandon the enterprise.

A major challenge in the judicial arena is to introduce the most current and rigorous scientific information related to genomic in a form that is most useful and understandable to judges and juries. Molecular genetics, like some other sciences, can be complicated and often confusing, even to those with scientific background and training. Because molecular genetics is also changing continuously, one can easily pit one scientific "expert" against another, with no clear mechanism to adjudicate between the two. Most scientists are uncomfortable with what they perceive to be the rigid demands of judicial proceedings. And shy away from "beyond reasonable doubt" pronouncements. The all- to-frequent result is that the scientific perspective is represented by fringe elements of the scientific community that may distort the state of the science. Although such distortion is not unique to genetics, prominent and widely publicized examples have been witnessed during the last several years, and the future unfortunately holds the promise of many more. It will be interesting challenge to explore whether the IPCC (Intergovernmental Panel on Climate Change, organized by United Nations in 1988) model can be adapted for use of genetic information in the judicial area, especially since the 1993 Supreme court decision in Daubert v. Merrell-Dow places responsibility on the individual trial judges to determine the relevance \and the admissibility of scientific evidence (4).

Human Genome Diversity Project

The word eugenics (from the Greek eugenes or well born) was coined in 1883 by Francis Galton, an Englishman and cousin of Charles Darwin, who applied Darwinian science to develop theories about good or noble birth. (5) Central to our human rights obligation is the promotion of" respect for, and observance of human rights and fundamental freedom for all without distinction as to race, sex, language, or religion." (6) The Universal Declaration of Human Rights is founded upon the notion that there are universally recognized human values and that these values are inherent in the human individual. The international community requires that every member of the human family be treated as person, that "everyone has the right to recognition everywhere as person before the law." (7) As far as HGDP is concerned, its ethical safety is to be judged in accordance with the minimal agreed human values expressed as human rights that form part of international law, and in accordance with the ethical norms current in the culture.

Cavelli-Sforza delivered a paper at UNESCO in 1994 to demonstrate how the Project will help combat the scourge of racism He explained "c.individual human are genetically quite diverse, but the average difference among human groups are small. They are much smaller than superficial skin-deep differences would lead us to believe and they are also relatively small compared with the difference existing among individuals within the groups." (8) According to him, racism will find no joy in the HGDP. But what bothers me the implied genetic reductionism that is at the heart of modern eugenics. Eugenics can be practiced within a population precisely on the basis of genetic reductionism that there are some lives that, it is popularly claimed, constitute a burden to the community, to the individual concerned, to that individual family, and whose quality of life is so low that these lives are not worth living. Such eugenics has nothing to do with race, but everything to do with disability.

The point is that eugenics is built upon an attitude that seeks its justification in science, just as racism is an attitude that may seek its justification in science. What we are dealing with are habits of mind and ways of thinking philosophically that are hostile to the key notion of the inherent dignity of the human individual and the inviolable and inalienable human rights that arise from such a consensus about the value of human beings.

Diane Paul and Hamish Spencer have pointed out the strong role of that politics and social values have played in the ready acceptance of eugenics by geneticists. "Nearly all geneticists were enthusiastic proponents of a movement in the first quarter of century that is now generally held in contempt. In Germany, not one geneticist criticized the inter-war eugenics movement." (9) The point is that we need to be clear that with both eugenics and racism we are dealing with political, social and ethical attitudes, and that eugenics in the contemporary era is not necessarily linked with racism. Eugenics may be linked to the human distaste of person with disabilities to Nietzsche's idea of the threat that the disabled and chronically sick pose to the healthy, (10) and to the economic burden on the community comes from the provision of the long-term care for the disabled, elderly, and the chronically sick. That being the case, it is naive to imagine that scientific information in and of itself, can overcome or even significantly undermine race as political category or eugenics as political and social movement. (11) It is interesting to note that the People of Republic China has recently enshrined the new eugenics in law in which carriers of serious genetic diseases are allowed to marry only" if the couple agree to long term contraception or sterilization"(12).

Certainly it is morally objectionable for government or institute or any third party to compel or coerce anyone's reproductive behavior. The right to reproduce without interference from third parties is one of the fundamental freedoms recognized by the international law and moral theories from a host of ethical tradition. (13) However, the goals of obtaining perfection, avoiding disease, or pursuing health with respect to individuals need not involve coercion or force. No moral principle seems to provide sufficient reason to condemn individual eugenic goals. While force and coercion, compulsion and threat have no place in procreative choice, while individual decision can have negative collective consequences, it is not clear that it is any less ethical to allow parents to pick the eye color of their children or try and create a fetus with propensity to particular skills. It is hard to see what exactly is wrong with parents choosing to use genetic knowledge to improve the health and well being of their offspring

HGDP can be carried out in a way that is sensitive to the ethical obligations found in international law. However we should also be clear that those who seek to use the findings of the HGDP to support movements and ideas, which are hostile to fundamental human rights, would no doubt do so. The correct response to this is not to say that findings will prove the opposite but to recognize that what science finds, and these findings should be put in support of fundamental human rights which derive from the universal belief in the inherent dignity of the human individual. Such values cannot be "proved" by science and neither they can be "disproved" by science.

References

1 McGee, G. Ethical issues in genetics in the next 100 years, pp. 245-8 in Fujiki, N. & Macer, D. Bioethics in Asia (Eubios Ethics Institute, 1998).
2 E.G. Moore v. Regents of the University of California, 447 U.S. 303(1980)
3 Heller and Eisenberg, Can Patents Deter Innovation? The Anticommons in Biomedical Research, Science 280: 698-701(1998).
4 Daubert v. Merrell-Dow, 113 S.Ct. 2786 (1993) .
  1. Kelves,Daniel J. Eugenics: Historical aspects. In Encyclopedia of Bioethics. Revised

Edition Warren t. Reich, Ed, New York: 1985, 765-770
6 Charter of the United Nations", Article 55(c).
7 Cf. Article 6 of the Universal Declaration of Human Rights (1948); Article 16 of the international Covenant on Civil and Political Rights (1966).
8 Loc. Cit., p. 17.
9 Paul Diane B. and Spencer Hamish G., "The Hidden Science of Eugenics" Nature 374 (1995), 304.
10 Nietzsche Friedrich, "The Geology of Morals". Edinburgh and London: T.N. Foulis, 1910,p.160.
11 f. a remark by Margaret Lock referred to in: 'The Vampire Project'. Hasting Center Report, Jan-Feb, 1995, p.2.
12 Genethics News, issue 4. 1995.
13 Annas G, Grodin M, Eds. The Nazi Doctors and Nuremberg Code. New York: Oxford University Press, 1992.

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