After the human genome sequence has been established at the beginning of this century, the possibility of knowing the genetic constitution of individuals opens a range of ethical, legal and social issues. Persons can be characterized by their genes and DNA sequence which can give information, for instance on paternity and health status, making them susceptible to discrimination and stigmatization (for example: stereotyping, showing prejudice, increasing health insurance fees or avoiding hiring someone by employers).

In general, there is an impression that Latin American countries are not prepared to respond to the development of genomics and genetic engineering which has taken place in developed countries. There is almost no interest from the governments for research in this area since they have more urgent priorities. As a result, Latin American countries act mostly as consumers resulting in little information being transmitted to lay civilians and a lack of legal norms to regulate this field in general. This contributes to the generation of certain anxiety since there are fears that certain issues raise by the expansion of genomic research, such as genetic modifications, could be manipulated and used for the interest of a few.

The present study is based both on data on the social representations of genomic research and its applications obtained through interviews and questionnaires to scientists, legislators, lawyers, student from journalism and engineering careers and civilians in four countries: Argentine, Chile, Mexico and Peru and on data originating from the biomedical and legal literature in these countries. The study is part of a project supported by the U.S. Department of Energy (Grant DE-FG02-02ER63435).

Data gathered through interviews and questionnaires shows that biomedical researchers appreciate more the benefits of the human genome project, but they see or experience the lack of governmental support for research. University students worry about the lack of equity in access to genomic medicine in the population and the instrumentation of human beings. Lawyers and legislators are worried about the regulation of genetic information because of its possible manipulation by power interests, of possible eugenic selection of embryos and of possible genetic discrimination by health insurers and employers (Table 1). Commercialization of genetic products for agriculture, for example, is seen as negative by all groups since it will benefit mostly the international biotechnological companies and not local farmers.

In general, human reproductive cloning is negatively valued by all groups, being associated with lost of singularity for clones, since they will be genetically identical to their parental nucleus; is seen as a form of manipulation or of using human beings as means to an end since its role in society is defined before the clone is born; also it is seen as a source of power by using clones for example for war or as servants or as altering human behaviours making clones more aggressive or by having psychological problems; some lawyers and legislators see it as an instrument of power which should be prohibited since certain genotypes would be chosen by those who take decisions, while others consider that it needs to be regulated. Among lay civilians, influenced by media portray, it is spread the uncritical believe that a human clone does not have a soul because it would be a replication of a being already in existence and that a clone is a exact copy of a person including his/her personality and conscience. Lay civilians fear that genetic manipulation may take away God’s role in human creation since new babies would be design according to human will not by natural means. However, therapeutic cloning is seeing as beneficial for its potential in organ transplantation by some.

Biomedical researches see benefits in the generation of transgenics for increasing productivity and enhancement of properties for cattle and agriculture, such as vigour, duration, nutrition and plague resistance. Lay civilians and university students tend to consider genetically modified organisms as dangerous for health, specially of inducing cancer and as artificial which is equated to lack of trustworthiness for consuming them.

What is written in legal and biomedical articles is similar to the data gathered through interviews with lawyers and researches. Lay civilians, on the other hand, seems not to be influenced much by the scientific literature, they rather  tend to rely on what they hear and see in the media.

With respect to the question of how respondents will react to participating in genomic research as subjects most respondents would accept to be enrolled in a study when the study has a therapeutic component,  maybe because it has a chance to benefit them. Researches are interested as well in scientific advancement and would accept more genetic enhancement for reasons related to beauty and intelligence. Reasons given for refusing to participate in genomic research are: fear of instrumentation or being treated as guinea pigs, fear of physical damage, lack of knowledge of what it means to be a research subject, acceptance of oneself with his/her weaknesses so that no change in genetic content is necessary, or lack of previous studies being made on humans.

In the study, the interviews were analyzed through the content analysis of verbal behaviour to evaluate the degree of hostility and anxiety of subjects in reaction to the possibility of genomic manipulation using the method of Gottschalk and Gleser. The study shows an inverse relationship between the level of anxiety raise in respondents and their level of knowledge. The group which produces the greatest level of total anxiety is that of the retire lay civilians who have very little knowledge on genomics, followed by lay civilians, university students, lawyers and legislators. Biomedical researchers is the group with less anxiety. In relation to hostility, lawyers and legislators report it associated with aggressive behaviour occurring in solving litigations and in their worries for genetic discrimination. Lay retired civilians present the greatest level of  hostility towards themselves because of feeling not worthy hostility of others to them because of feeling being discriminated or disrespected by others, probably associated to their situation of lack of social support in general in Latin America for which they feel discriminated and they lack self esteem.

Review of the scientific and legal literature shows that the application of genomic research can have social, legal and ethical consequences, both in personal and familial spheres and also in broader collective spheres which can affect societies and communities.

Personal and Familiar Issues

It is expected that knowledge of the human genome will offer new ways for prevention, diagnosis and treatment of diseases with a hereditary component. There are many possible advances in genomic medicine. However, presently there are no preventive or safe therapeutic measures for most hereditary diseases in contrast with the development of diagnostic and predictive capacity of genetic probes. This raises the issue that some genetic information may be unwanted for some individuals since it will generate unnecessary anxiety due to lack of preventive or therapeutic solutions.

Genetic modifications in general carry greater risks than benefits. For example, with respect to somatic gene therapy, there is a high risk associated to the intervention so that it is recommended only for serious diseases without cure. Caution is expressed for genetic modifications in the germ line since it may alter the integrity of human genetic patrimony by introducing undesired alterations and because of lack of consent for future generations. Genetic modifications leading to enhancement, such as for increasing intelligence or for giving advantage in some human qualities, is viewed as non ethical since their use in the present cultural circumstances will aggravate social differences due to their restricted access to those who can afford it.

Even though genomic research and its applications is positively perceived by some stakeholders, it is recognized that there are genetic manipulations contrary to human dignity and fundamental human rights, demanding regulation through legal norms and sanctions. For example, human reproductive cloning is, in general, negatively perceived by many different agents who want to regulate, criminalize and penalize it. On the contrary, human therapeutic cloning (the use of clones for culturing embryonic stem cells and posterior organ transplantation) received a better judgment by some scientists, but their critics indicate that this technique manipulates human beings by using them just as source of organs.

Another topic refers to the privacy of genetic data since this information can be used as an instrument of power by third parties. The protection of genetic information implies that only the person from whom it is derived can authorize the use. The principle of autonomy must prevail unless there is a criminal cause or risk of damage to others, in which case a court order can overrule the confidentiality of the data..  Informed consent is required for any genetic test. They need to establish clearly who will have access to the information and which will be the uses of the sample taken, including possible future research. Among the negative consequences of lack of privacy is the possibility of genetic discrimination, particularly in the area of health insurance and employment. There is concern that employers may avoid hiring workers with particular diseases based on genetic tests or that insurers may establish their fees based on the results of genetic tests. However, the reality in Latin America is that currently there are no court cases due to genetic discrimination and there is no danger of adverse selection in Latina America with respect to the customer knowing more than the insurance company, since practically the only reliable genetic tests are for monogenic diseases of low frequency in the population. Nevertheless, legislators suggest to regulate against employers and insurers requiring genetic tests.

Collective Issues

Biomedical researches, lawyers and legislators in Latin America worry about the commercial mentality associated with genetic research and to the fact that it may lead to increase the gap already existing between developed and underdeveloped countries. There are also objections to the commercialization of genetically modified organisms, since the tendency is to use the genetic richness of Latin American natural products for patenting new organisms in developed countries. This can have negative effects on Latin America since those same patents can then be used to restrict access and change farming practices in Latin America.

There are worries about the possible effect of a decrease in biodiversity because of the use of genetically modified organisms in agriculture.. An example is what is happening in Argentine, where the  agricultural production system has become dominated by one crop: the transgenic Roundup Ready soybean developed by Monsanto. This crop is resistant to the herbicide glyphosate and relies on repeated herbicide applications to control weeds. But Nature finds ways to evolve around it. Already, strains of Roundup-resistant weeds have appeared in Argentine, requiring ever-heavier doses of the herbicide, killing off microbes and degrading soil quality. Heavy herbicide applications and widespread planting of Roundup Ready soybeans has also led to increases in pest and disease severity. The rate at which forests in Northern Argentina are being turned into soy plantations is 3-6 times higher than the world average. This massive destruction of  forests has sparked violence and protests by agrarian families and is changing the local climate to a semi-desert causing both droughts and flooding.

Another important point is that part of the advocacy done by environmentalist groups and the fears expressed by the civil society are focused on arguments that are not always scientifically sound. The idea of rejecting genetically modified organisms because of being artificial or that human beings act against sacred laws of Nature by introducing genetic modifications can not be sustained.

However, there are very few studies which show possible toxic risks or adverse effects on health because of consuming transgenic food. Some of the potential adverse effects identified are: allergy, resistance to antibiotics, lack or modification of the nutritious value of food, presence of toxic components, emergence of new non treatable diseases and possible damage to wild species. There is, therefore, an ethical exigency for guaranteeing test trials for every transgenic introduced in the market.

With respect to human genes patenting the legal, ethical and intellectual legitimacy are at the centre of many debates The practice of commercializing the human genome is contrary to the 1997  UNESCO Universal Declaration on the Human Genome and Human Rights, which considers that “the human genome in its natural state can not give rise to pecuniary benefit”. Patenting gene sequences without knowing its function or utility can hamper the creativity of other researches who could have use those broadly patented sequences to pursue crucial research projects  The countries which possess the technology and are governed by a comprehensive patent system control and dominate the market (appropriating unethically an information that is shared by all human beings. The initial plan of the Human Genome Project Consortium was to generate genetic data with free world access avoiding competition which would restrict access to information and would made human genes enter into the patent system and genetic tests a big business. Unfortunately, the intrusion of Celera Genomics in generating the whole human genome sequence and the interest of Biotechnological companies in generating patents has prevail and the breach between developed and developing countries is increasing because of biotechnology.

The study concludes that bioethics has a role in clarifying the complex topics of social consequences of access to genetic information and that the human genome is a juridical good that must be protected. Clearly, lack of knowledge and reflection creates anxiety as is shown in this study. Therefore it will be helpful to improve information about these issues in a critical way at all levels of society.