No one is denying that Serbia is in dire need of programs that can pull her out of the mud in which it has been drowning for decades. No one is also denying the right of the various parties to publicly express their ideas. However, the value of these ideas can only be proportional to the number of voters and followers of these parties. The Serbian Progressive Party (SPP), possibly the most significant party today in Serbia, in this sense, also carries the largest share of responsibility. SPP has just recently issued a White Book, the party’s future action platform, which one may also say very much resembles a lengthy pre-election pamphlet that contains everything, from the party’s position on renewable energy sources, to strategies for increasing birth rates, achieving maternal rights, social justice and a corruption-free society.
Maybe life in this country has made us become great cynics, maybe we do not know how to identify the right people for the right moment, perhaps out of sheer masochism we would like to reject everything good being offered to us, or maybe, just maybe, we all know the kind of people we are dealing with here and who are the individuals from SPP that wish lead us into the future (one should not even mention other political parties; all of them more or less the same). Majority of people that were able to finish reading the complete document, have the same comment – this pretentious document only doesn’t deal with global warming and saving endangered species from extension.
However, of greatest concern are the parts of the White Book in which SPP’s social policies are discussed. First of all, members of the Progressive party would deal with the “white plague” (I can not even start to explain how much I hate that phrase) through the policy of encouraging birth and special care for women who have contributed most to population growth. Through such an approach the Serbian society would multiply and, undoubtedly, be exposed the “affirmation of traditional values”, although what these are was never explained in the white book.
From the quantity should arise quality, in accordance with the dialectic laws taught by Stalin – however this would not be allowed to happen completely by chance, as reproduction would be controlled at the national level through detecting “children with hereditary disorders”. In the implementation strategy of such a social policy, central place is given to the National or Regional Genetic Centres, that would house “data on genetic potential in terms of either predisposition to progress or hereditary predisposition to certain disorders”. NPP is hopeful that identifying individuals and families with a specific genetic burden would reduce the number of people that, over the course of their lifetime, would suffer from cancer, cardiovascular diseases, obesity, alcoholism, various psychiatric diseases, etc.
This whole thing is wrong in so many ways that I have a huge problem just organizing my critique. Others that attempted to provide arguments against similar programs internationally (not that they are non existent outside Serbia) have faced similar problems. I will start with the genetics which is my area of expertise. In the early 20th century, science has, due to the enormous initial progress in the field of genetics, gone into extremes attributing absolute powers of our genes over our lives and all aspects of our individual personalities and societies. According to this perspective, otherwise known as genetic determinism, depending on the combination of genes which we have inherited at birth we have been predetermined to express specific attributes and potentials, and even assume certain roles in the society. From these ideas emerged eugenetics – a program to improve the quality of the human race. Namely, if one could reproduce only individuals with wanted characteristics, while stopping the reproduction of those with unwanted ones, populations would slowly end up having only “good” genes, while the “bad” would disappear. The idea itself is very appealing, and because it had been presented as “scientific”, marked the social politics of western European countries, US and Latin America until the 60s and even possibly 70s of the last century. In Nordic countries, similar to the proposals found in the White Book, eugenetic program is justified by economic prosperity and social progress. Much has been written on the topic of eugenetics, so I will skip further elaboration on this shameful episode of science and its social consequences.
Genetics today has a much better understanding of the genetic origins of many diseases. A large number of so-called monogenetic diseases, such as enzymopathies, cystic fibrosis, Huntigton’s and other neurodegenerative diseases, have known mutations on specific genes, which cause the disease. Other diseases, known as multi- or poly-genetic (such as cardiovascular diseases, Alzheimer’s dementia, multiple sclerosis, arthritis, various psychiatric diseases), have a hereditary basis which is very complex and about which we have only limited knowledge. Namely, the link between these diseases and genes is primarily statistical, meaning that there is possible association between certain gene variants and the predisposition for disease development – certainly not a definitive diagnosis.
Because we do not know which genes, that constitute the normal (non-pathological) variability in human populations, are responsible for developing certain pathological conditions, we also are not able to identify environmental factors which may be a “trigger” for developing a disease. For example, one of the forms of the apolipoprotein E (APO-E) gene, which has been associated with a greater likelihood of developing Alzheimer’s dementia, is present in 14% of people. However, just 40% of people with this type of a gene will develop the disease, as well as will a number of people who do not have the gene. In addition, it is believed that at least 10 more genes located on at least 4 chromosomes could have a role in the development of Alzheimer’s dementia. It has been shown, with some certainty that by modifying external factors, such as treating high blood pressure or having a high level of mental activity can decrease the likelihood of becoming sick. It is also useful to note that the type of Alzheimer’s dementia which develops early in life probably has a completely different genetic basis. Pretty complicated, isn’t it? In reality, this complexity applies to all hereditary or genetic diseases.
An attempt to link specific genetics to mental illnesses and certain behaviours is an issue for itself, because these illnesses and behaviours are an outcome of a large number of genes that are expressed through complex, not well understood, interactions. In addition, ultimately they contribute to less than 50% of the total observed human heterogeneity. In other words, our environment and individual experience to a great extent determines our behaviour and the expression of certain personal traits. For example, potential predisposition towards alcoholism (I am taking this example because it was mentioned in the White Book), may involve at least 19 genes (their specific variants), which contribute only modestly to the development of alcoholism, as demonstrated through population studies. This means that it is primarily environmental alcohol exposure during various stages of life, as well as different emotional states and experiences that will turn us into alcoholics – again without certainty.
To date, the most exploited has been the acknowledged association between the potential for aggressive and criminogenic behaviour and one gene variant of the monoamino oxidase A (alel MAO-A) enzyme, the so called “criminality gene”. However, if it was really the case of complete association, all incarcerated criminals would be carriers of this gene, which has been shown not to be the case. Nevertheless, what is interesting to note is that people with this gene may be more likely to engage in different types of aggressive behaviours, but only if they have been exposed to family violence in their childhood.
My attempt to, in brief, list examples of genetic complexity, intends to point out enormous flaws of any program that may have slightest to do with eugenetics. First, it is clear that it is impossible to eliminate “destructive heritage” because expression of genes, with rare examples, is dependant on living conditions and other genes. Second, if we take this to the extreme, no one would be allowed to have children because each of us is a carrier of at least several new mutations that our parents did not have, in addition to all that we have inherited from them. Third, even if we do have a certain disorder, deformity or something else, we can be highly talented and genial and thus significantly contribute to the society and our civilization. Steven Hoking is an excellent example – despite suffering from a neurodegenerative disease called ALS, he has provided us with remarkable insights into the area of astrophysics.
A perspective that our biological foundation plays a crucial role in criminality, disease and behaviour development, and that there is a need for political measures in order to improve individuals, completely marginalizes social factors and the need for societies to evolve. Making a distinction between sociallyy useful and unuseful (expensive, harmful) traits suggests that certain population groups such as those who arehandicappedd have a lower quality of life and therefore do not deserve to live. Who can even consider assuming the right to make such qualifications?
Am I advocating here for the secession of genetic testing? Absolutely not! Today Serbia has many genetic counselling centres which employ professionals whose goal is to provide families and future parents with information about potential risks to their children, after conducting prenatal genetic testing and taking into consideration their family histories. However, these counselling centers provide only “non-directed genetic advice”, based on the principle that concerned individuals can make autonomous and rational choices. And that is it – an individual choice as opposed to a directive.
Taking into consideration all which has been said, an important question arises – why do some countries of the developed world then have national genetic databases? Ultimately, the approach that has been suggested by SPP very much resembles the US law S1858. The first country that adopted genetic database legislation is Island, in 1998. With this act, the government of Iceland authorized a private company called deCODE Genetics to create a database that will contain genetic and medical information of all citizens. While the Government remains the owner of the data (for the purpose of using the data for policy development), the private company has an exclusive commercial licence to use the data(base) for research and development of therapeutics and pharmaceuticals. In return for this exclusive right, the company must provide free treatment for those diseases for which therapy has been developed as a result of using this data. At the very start of the project, it was believed that all citizens would participate. However, many non-governmental organizations, which include the Iceland Medical Society and the Society of Icelanders for Research and Medical Ethics, have called attention to a large number of privacy-related issues, which resulted in a large number of people requesting that their information be removed from the database. The country’s top court, in one of the cases relating to this legislation, has judged that it is in violation of the constitutional privacy protection rights. Specifically, a daughter of a deceased man requested that information relating to her father be removed because, despite the fact that the data is anonymous, other information (age, profession, disease, etc) would allow this person to be identified. Also, because it is a person with whom she has in common 50% of the genetic material, her privacy would be violated as well.
In Estonia, development of such a data base was initiated by the Estonian Genomic Project Foundation in collaboration with a company from California called Egeen International. The company, unsurprisingly, received exclusive commercial rights to research, primarily involving the efficiency of anti-depressives. The owner of the data is the state which is the founder of the Estonian Foundation, and the profit is equally divided. Even though citizen participation in the project is voluntary, very concerning is the fact that doctors are financially motivated to persuade patients to provide their biological specimen – as it has been cited, these doctors are paid five times the average hourly wage in Estonia.
United Kingdom also has a register called the UK Biobank. Founders include state funds, physician councils and the Department of Health. Controversies linked to the project, as with previously described cases, concern money flow (financing which is far greater than that provided to other projects) and the cooperation with biotechnological and pharmaceutical companies in managing private citizen data. As well, it is interesting that a court order can provide the police with access to genetic information/profile of any citizen. In Sweden, a biobank under the management of UmanGenomics, was founded in 1999 in order to commercialize a large medical database located in Ume. In 2003 their work was legally regulated through national legislation.
US initiated consultations regarding a national genetic database in 2002, but legislation was presented to the Senate only in 2007. This legislation became federal law called “Newborn Screening Saves Lives Act of 2007“ (S.1858) after it had been signed by president Bush in 2008. In case that you are interested in the key elements of this legislation, you can consult the SPP White Book. We don’t know what will be the outcome of similar legislation in Serbia, but the Bush law includes the ability to take samples from each newborn without parental consent and has not regulated issues regarding privacy and the length of data storage/preservation. How much this has to do with money and various private companies is not known, but one can only suspect.
In my opinion, creating these national databases can not provide more direct benefit to individuals above those currently being provided through genetic counselling centers. On other hand, there is immediate financial benefit to companies as well as others who become involved in such projects. Of course, I don’t wish to negate the long term benefit for everyone in the form of therapies that may be developed through credible research involving a large number of individuals. However, any human research must be based on voluntary participation and very precise regulation regarding data which may not be used by the state for any other purpose.
Ethical issues concerning the use of genetic data, repeatedly pointed out by all civil rights organizations are numerous. Besides the unquestionable right to know everything, a right not to know anything is equally important. Let’s assume that a person is a carrier of genes which suggest that at some point in life he will develop a disease, such as the lethal Huntington’s disease. Again, let’s assume that there is no known therapy which may prevent the development of such a disease or its symptoms. Knowing something like this would certainly burden the disease free period of life of both the person and those around him.
Discrimination with regards to health and life insurance has been a long-time topic of debate. Pressures from insurance companies to get access to genetic and health data of their clients have a completely logical business justification; in case that a genetic profile indicates a predisposition to something, premium rates will increase. It is clear that the insurance agent will not concern himself much with the fact that such a predisposition does not imply a diagnosis. Issues regarding employment are no less important. The employer has a clear economic interest to employ individuals that will not be abstaining from work because of their health issues, or to not employ someone who is labelled as a future alcoholic or criminal. How many employers can understand that having a certain gene does not mean that a one will develop a certain characteristic?
Finally, parents belief that their children have a certain genetic predisposition would drastically change their behaviour towards them. One should not also forget the social stigmatization of an individual as a result of such a belief. Who, ultimately, can judge if a personal trait is socially acceptable or not?
Ethical questions are not only important for medical databases. Forensic registries contain genetic profiles of individuals who may be implicated in criminal activities, which are required in legal proceedings. As well, identifying remains of people who were killed in mass catastrophes such as tsunamis, earthquakes, terrorist attacks or who have been victims of war crimes or genocides is often impossible without a DNA analysis. The difference between medical and forensic registries is that forensic use genetic markers that can not be associated with any diseases or personal trait, and are solely intended to establish relations.
The story about forensic national registries is complex and requires a special analysis. I would only like to discuss ethical issues that are abundant whenever the government is in possession of citizen DNA data and when legislation concerning data is above and beyond constitutional limitations concerning individual/civil freedoms. That it is not just my paranoia demonstrate numerous examples of the European Court for Human Rights rulings.
Since the second half of the 90s, in countries such as the US, UK, France, New Zealand and subsequently many others, forensic databases containing millions of individual profiles have been created – CODIS in the US has over 9 million records, while the UK registry has over 5.5 million individuals. Whose data will find its way into the forensic database is a matter of state regulation. In Sweden, Scotland, Germany and Norway it is a rule that, with few differences between states, registry data is limited to the genetic profiles of hard core criminals with an aim of helping to identify them more easily in case needed.
UK is, from the perspective of individual rights, a particularly difficult case. Data of all who have ever been suspected by the police (either later released or convicted for a petty crime) is entered into the same database containing data about individuals who have committed serious crimes such as rapists and murderers. After the ruling of the European court for Human Rights following a suit by two young men suspected and later acquitted of all charges, UK changed its policy to holding such data for 12 years. Reactions of citizens and different organizations have led to that decision being overturned, so that this time period has been reduced to “only” 6 years. Even though it is believed that those who commit serious crimes in jail loose a part of their civil rights, question arises how one can justify the same for those who have not been found guilty. Pioneer of forensic genetics and the founder of the UK registry, Sir Alec Jeffreys, is a great opponent of private data manipulation. According to him, there “is a presumption not of innocence, but of future guilt”.
As the case with many others, this issue also entails the conflict between the tendency of the state to maximally control its citizens, and the rights and wishes of citizens to fully practice their rights and freedoms. New technologies, such as genetic analysis, create new social environments which require better citizen education. Serbia is not far behind in the technological application of these modern knowledges, but it is very far from having an objective perception of its social consequences. Useless and old concepts, presented in pre-election pamphlets with the sole goal of impressing the electorate, will not help us learn from the mistakes of others. In this matter, the civil society should have the greatest role.