Genome creates too many fears and expectations

The president of the School of Health Sciences of the University of Minho, Pinto Machado, and member of the National Council of Ethics for the Life Sciences Daniel Serrão consider that the decoding of the human genome created exaggerated expectations and fears.

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However, Pinto Machado argues that the perverse effects of knowledge, such as the commercialization of genes, the genetic programming of offspring and the imposition of genetic tests, can lead to the emergence of the "proletariat of the genetically disadvantaged". For his part, Daniel Serrão affirms that the solution is the vigilance and the mobilization of the people for the defense of this patrimony of humanity.

The head of the new school of the minhota academy said yesterday at the IV Conference on Biological Engineering / II National Meeting of Young Biotechnologists that the project of decoding the human genome, started in March 1986, can bring great benefits to health, But also to allow perverse uses of knowledge.

In their view, the private organizations working on decoding, such as the powerful Celera Genomics, intend to register patents for the genes they discover in order to make a profit. Pinto Machado recalled that, despite the economic interests involved, several international institutions have published documents specifying that the human genome can not be patented.

On the other hand, knowledge can awaken in parents and totalitarian states the desire to create genetically perfect people. In the opinion of the academic, "children à la carte" constitute an attack on human dignity, since parents become both parents and clients and children a commodity.

The guest of the Nucleus of Studies of Biological Engineering also defended that the advance in the knowledge could also lead to the "express or hidden compulsion of genetic tests by the exclusive interest of third parties, with possible injury to the tested ones". In the long term, it may be necessary to "pass" genetic testing to enter a new job, take out insurance, apply for a loan, adopt a child or obtain state reimbursement for health expenses.

However, there are also beneficial applications in the health field. Scientific findings may lead to the improvement of genetic tests that allow the diagnosis of diseases with exclusively or partially genetic causes, with the consequent possibility of combat. Gene therapy itself is still an "insipient" field, but "the greatest hope for the treatment of disease" is placed.

Pinto Machado also underlined the development of pharmacogenomics, which will allow a medication directed to concrete people without side effects. The scholar does not believe that it is possible to make the medication "without errors", but says that the deepening of this area has advantages "for patients and for the pharmaceutical industry".

A long way to go
The president of the School of Health Sciences argues that the mediatization of work in this area has generated "illusory expectations", since "genes, however excellent, are not capable of ensuring everything". In his opinion, what was discovered is just the beginning of a long walk that will take decades to go. The teacher considers that close to what there is to discover, deciphering the hieroglyphs of Egypt is a task for "babies."

Daniel Serrão agreed with this position, stressing that at present there is the base of a mountain that still has to be climbed. The member of the National Ethics Council for Life Sciences held that 'what was actually found is not patentable, but something may appear'. And some steps have already begun to be taken at the international level that justify people's attention.

The speaker argued that for further research it is necessary to carry out 'blood tests on homogenous populations', a process which is already under way. Private companies have already acquired the right to access genetic information from the population of Iceland and an island in Polynesia.

Against this background, Serrão considers that civil society can not 'rely heavily on the major international bodies', as can be seen in the preparation of the Unesco Convention, which states that the human genome is 'in the symbolic sense a patrimony of humanity'. In his view, the most important thing is to 'inform the population' so that it knows how to give an adequate response when any 'attempt to introduce a scientific discovery' is made that goes against its will. "We have to be careful," he warned.