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The Human Genome
Project
Secrets and lies
Fátima Oliveira
- a scientific consortium exclusive to the wealthy countries of the world - was launched in 1990 and aims to identify and sequence the genetic code, and prepare a map of human genes. There are still mysteries to be solved, for instance, how many human genes are there? While the map was not yet finished, on 26 June 2000, in a "dedication ceremony" via satellite, the President of the United States, Bill Clinton, and the British Prime Minister, Tony Blair, shared the glory of winning the "human genome race", and of revealing what they regard as their governments' greatest achievement: the privilege of telling the world that the mystery of life had been unravelled and that they are the holders of bio-power. But, why announce the conclusions of unfinished research? This is a pertinent ethical question, which provides us with clues to understanding issues relating to the private appropriation and commercialisation of life. There is speculation that behind all the urgency is the biotechnology sector of the pharmaceutical industry and its eagerness to promote the profitable business of "genetic diagnosis kits", on which predictive medicine is based.
I am passionate about genetics and consider it to be one of the most fascinating areas of bioscience. For this reason I followed with particular interest the progress of the Human Genome Project (HGP) from the moment when it was announced that the human genome (the set of genes of a species) would be mapped and sequenced. Mapping involves discovering the location of each gene and sequencing means ascertaining the order of the pairs of nitrogenous bases, which in DNA (deoxyribonucleic acid) are: A = Adenine; G = Guanine; C = Cytosine; and T = Thymine.
Certain longstanding questions are still relevant and unanswered today. The human genome is a heritage of humanity. The Universal Declaration of Human Rights and of the Human Genome - an ethical recommendation that does not have the force of law - states that "the human genome in its natural state should not give rise to financial profit" (UNESCO, 1997). Considering that our genes belong to us and constitute a right we should not relinquish, it is worth posing the question: if people do not own their own genes, what is left to them?
These considerations make it clear that in this day and age understanding genetics is an essential condition for exercising citizenship. Therefore, it is necessary to decode scientific language and place genetic knowledge at the disposal of ordinary people. This is a political issue with wide-ranging implications, because science, and in particular genetics, is too important to remain solely in the hands of scientists or governments. Society has to exercise the right and/or duty to decide, and not merely to be - partially - informed.
A gigantic lie
One of the most important consequences of research on the human genome is the accumulation of scientific proof that, in genetic terms, human races do not exist. Molecular genetics, prior to research on the human genome, states that, taking DNA as the hereditary material and the gene as the unit of biological analysis, it is impossible to say whether these structures belong to a person with black, white or brown skin, because the gene carries the potential for characteristics but not the characteristics themselves.
There is NOTHING in genetics to corroborate racist theories, although historically it has been subject to ideological deviations that seek to verify such spurious claims.
Luca Cavalli-Sforza in "La Geografía de los genes" (1995), provides fundamental evidence that human genetic diversity is so vast that it is scientifically impossible to talk of human races. Recent research shows that there is a single human species (Homo Sapiens) and that, within the species, genetic variability imposes, as the normal pattern of nature, the genetic uniqueness of each human being.
This illustrates how important it is that the Project for Human Genome Diversity (PHGD) ratify such scientific truths. In this world racial / ethnic oppression is an unquestionable fact and we know that the concept of "human races", while not invented by racist ideology, has been appropriated and recycled by it. In both the popular sense and in its use by intellectual elites, the term "race" reflects a biological understanding of something which, to use current language, is our genetic fate. Such notions are false and unscientific. There is no universal concept of what race is. According to contemporary knowledge, the biological significance of "race" resides in the uniqueness of the species. Racism, therefore, is based on a gigantic lie.
Hopes, suspicions and fears
What is predictive medicine (what some call "preventive genetic medicine")? And what are the implications for it of the Human Genome Project? In general terms, predictive medicine ideally means, the possibility of predicting to: prevent illnesses that can be prevented, without discrimination; increase proposals for treatment and cures; and guarantee human dignity, with due consideration for socio-cultural contexts. Predictive medicine is still a field full of unknowns, even technical and scientific ones, some of them immense, which makes it the target of expectations, suspicions and fears.
I believe that predictive medicine represents a way forward that must be built in response to the various concerns regarding what it should be: the possibility of improving the quality of life and of always reducing suffering, and of curing, whenever possible. The publicity about its benefits - most of them hypothetical - is illusory. The prospects of being able to make accurate diagnoses are great, but the cures, and even minor treatments, remain few, and the spectrum limited.
Although predictive medicine's most visible branch of activity is genetic diagnosis, it also includes "genetic therapy" for somatic or germ cells, cloning, and the use of embryos for research. Inevitably, many of its interventions have overt or tacit eugenicist overtones. The semantic and epistemological bases of this field of research do not reject the reductionism inherent in the "genetic approach" - whether certain or probable - nor the dangerous and utopian incongruities of genetic fatalism. This is the mistaken, reductionist idea that genes can do everything, like infallible oracles, which always express themselves and work, without environmental interaction. The belief in the "DNA dictator" and the "selfish gene" diverts attention from the basic truth of the holism of nature. It produces stigmatisation, the invasion of privacy, the lowering of self-esteem, an increase in prejudiced and discriminatory ideas, all subjects worthy of a more refined analysis, since they claim to respect the right to decide and to voluntary motherhood, essential aspects of the exercise of citizenship.
| The magical
world of life sciences
Biotechnology may be as old as humanity itself. Ever since women invented agriculture - long before biology became a recognisable science - humankind has been manipulating genes to ensure its survival. Biology is the science of studying living beings. Genetics is the area of biology that studies genes - "bits" of a molecule called DNA (deoxyribonucleic acid) found inside the cell, in a structure called a chromosome - consisting of a single DNA molecule. Genes are parts of the DNA molecule. In the DNA, and more specifically, in the genes, is "stored" the secret of the life of plants, animals and human beings. Genetic engineering is a biotechnology that works by manipulating genes. Biotechnology is the application of technology to biology. Not all biotechnology is genetic engineering, but genetic engineering is a biotechnology. This means that for a biotechnology to fall within the category of genetic engineering, it must manipulate genes. |
The benefits and evils
Although studies on the human genome take as their starting point a range of positive-sounding hypotheses, such as the more accurate diagnosis of genetic diseases and even cures for some of them, it should be remembered that promises of therapeutic breakthroughs - the most powerful lure of the commercialisation of genetics - will for decades continue to be mere promises. Research on the human genome has provided us with tools to fight against racism, but it has also left us a far-reaching bio-ethical conflict, because "genetic diagnosis kits" undermine our privacy, since our genes carry our life story: they record our past, report on our present and can disclose much of our future. For this reason, they should be considered inalienable personal goods and genetic privacy should be regarded as a fundamental right to be protected.
There are no prospects of universal laws/regulations on genetics being introduced, but there is an urgent need to establish universal bioethical references to guarantee dignity, bio-security and human lives, and to deal with potential harm done, discrimination and the risk of biological erosion and pollution. The development of an approach to the diagnosis and treatment of genetic diseases involves consideration of conceptual, clinical, and epistemological elements, as well as the social and ethical impact on individuals and the population at large. It is estimated that around five per cent of diseases are "genuinely genetic", that is, they result from genetic determinism and are independent of environmental interaction. It is this five per cent that the corporations are targeting, because there is an enormous market for genetic probability tests (which determine the - still remote - chance that you will "one day develop" a disease). Out of the six thousand genetic diseases that can be diagnosed, the genes of barely one thousand have been located; nearly eight hundred can be tested for, and treatment exists for only a few.
Making available genetic diagnosis for diseases that still have no cure is a potential source of anguish and may lead to a reduction in the quality of life for many people, which makes the ethics of the matter at the very least questionable. Given the deterministic nature of the genetic approach, it should be remembered that erroneous results are frequent, and not negligible, and that their reliability depends on the use of appropriate sampling methods, the quality of the sample, the state of the testing equipment, technical competence and even the subjectivity of those interpreting the results.
The right to know or not to know
Pre-natal genetic diagnosis to discover diseases, whether minor or life-threatening, so that those affected can lead a dignified and full life, is not considered ethical and is banned in many countries. One example is hereditary sickle-cell anaemia - the most common genetic disease among black populations and the one which most affects the Brazilian population. Pre-natal genetic diagnosis of sickle-cell anaemia is a polemical issue because foetal medicine has not yet discovered how to "cure" a sickle-cell embryo / foetus. The only alternative to continuing with the pregnancy in the knowledge that the baby will be born with the disease, is to abort, a solution that is inevitably conflictive. Even in countries where abortion is legal, the mention of "eugenic", "therapeutic" or "compassionate" pregnancy termination prompts a heated debate. In Brazil, the Ministry of Health's Sickle-cell Anaemia Programme does not offer prenatal diagnosis for sickle-cell anaemia, but it is available from private health service providers and is accessible to those who can afford it.
Prenatal genetic diagnosis to detect diseases for which there is no cure, but which do not preclude the sufferer from leading an independent or dignified life, and for which the most likely recommendation is abortion, raises serious debate in different cultural contexts. In Cuba the Sickle-cell Anaemia Programme offers foetal diagnosis and also abortion in the case of a sickle-cell foetus if the mother or the couple so desire.
| Insuring
our rights
Health and life insurance companies charge exorbitant prices and even refuse cover to people who are carriers of some genetic diseases or malformations. Theoretically, in Brazil genetic testing is unregulated. In practice, health insurance brokers are guaranteed the right to refuse to pay compensation for the treatment of congenital diseases, except for dependants born while the insurance policy was active. "Genetic tests" widen the scope for exclusion from health and life insurance, as well as from the labour market, unless society acts quickly to curb the abuse of genetic privacy. Some bioethics experts argue that the insurance companies have the right to know the risks they are running, and must therefore be allowed to require genetic testing. This argument is itself a defence of the abuse of power. Conceptually speaking, insurance is a risk contract. Ethically, it is the responsibility of the insurance companies to bear the costs of their business and not to invade our genetic privacy in order to maximise their profits. The ethical dimension of banning the insurance companies' requirement for direct or indirect genetic testing (for example, for sickle-cell anaemia) should be regarded as a measure of the full protection for citizen rights. It is not enough to leave the market to regulate and only carry out "genetic testing" with authorisation from the person concerned - we must defend our right to know or not to know. |
The right to one's own genes
There is consensus within the feminist movement, and majority support in the bioethics movement, regarding a woman's right to receive the state's support when she wishes or does not wish to have children, including the legalisation of abortion. This does not imply making abortion compulsory, it merely enables a woman to terminate a pregnancy without resorting to civil disobedience in exercising her "right to decide over her own body." Defence of the right to abort - according to each woman's needs, conscience and choice, and independent of the reason for doing so - opposes the use of abortion for "improving" the population and rejects making women feel guilty or penalising them for having children identified as "defective" or "social burdens".
Bioethics experts and bio-ecologists warned that following the discovery of the human genome, the epicentre of the struggle for human rights would be the right to one's own genes, that correlative rights would be revived and that the unacceptability of patents having supremacy over the right to medical attention, treatments and life, would be brought to light. Their predictions were right.
Human genes: can and should they be patented or not?
The knowledge that DNA is the linking thread in the relationship among living beings is being trivialised. Life - reduced to a manipulable DNA molecule - and the raw material of the sacred biotechnology and genetic engineering sector, is idolised in molecular biology "laboratories/oratories," sites of the processes that turn it into merchandise. Bearing in mind the lesson learnt from bioethical intolerance, we must condemn scientists who preach that the right to one's own genes and to the human genome as part of the heritage of humanity exists only on a symbolic level. They want to convince us that the material expression of life is a mirage.
This claim - that intellectual ownership of human genes is ethical - is false, since it lacks any kind of moral foundation, and is based on an ideology of enslavement and on the megalomania of a few "gods of science", because no one invented life. Since patents were first introduced (1883), they represent a contract between the inventor and society, based on a simultaneity of invention, novelty and industrial interest. To discover is not to invent, and as life is not an invention it cannot be patented.
The concerted effort to get round the rules of the game for patents in order to make them apply to bio-science discoveries is an example of the deep-rooted, historical abuse of power by the dominant classes, in a new guise. An irrefutable truth emerges from this scenario: that the concept of dominant classes has not been overcome and today they are struggling to define who will lead their resurgence, via biotechnology. For good reasons, Clinton allied with Tony Blair to announce that the human genome is part of the heritage of humanity (what humanity?) and that discoveries should belong to the public domain. He managed to "contain" the insatiable desire with which Craig Venter and the private sector - the pharmaceutical industry leading the way - were circling the "crock of gold" of human DNA. We do not know what kind of deal was made between public and private science. Some speculate that this is what Clinton was referring to when he declared that the question of patents for the human genome would depend on the context.
In the race towards human patents, some sectors of the scientific community have forgotten the social function of science and their former ethical commitments (Resolutions of the First South-North Conference on the Human Genome, 1992). They are going back on their promise to not commercialise human DNA, even while admitting that the possibility of human patents is a cause for concern. Although some scientists are revealing their true colours, governments still keep theirs under wraps (until when?). Society, which is paying for the big science race, needs to understand that once the Human Genome Project is completed we will have discovered who we are, but ...
Fatima Oliveira is a Brazilian doctor, Director of the Health Network/National Feminist Health and Reproductive Rights Network, the Brazilian Women's Union (UBM) and the Brazilian Bioethics Society (SSB); she is Advisor to the National Council on Women's Rights (CNDM), Coordinator of the Bioethics Information Network (bioethics and feminist and anti-racist theory) and of the Feminist Bioethics List. She is the author of several books on the subject.
See also the website of
"Rede de Informação sobre Bioética: Bioética
& teoria feminista e anti-racista":
http://culturabrasil.art.br/RIB
Translated by Victoria Swarbrick