by Atina Krajewska
GATTACA, premiered in 1997 and shown recently at a SciSCREEN event at Cardiff University (http://www.cardiffsciscreen.co.uk/film/gattaca), depicts the world in not-too-distant future, in which genetic discrimination, segregation, and liberal eugenics are the unintended consequence of genetic screening technologies meant to assist human reproduction. Arguably, now that the not-to-distant future has arrived, the following question arises: to what extent our world resembles this of GATTACA? Some have pointed out the widespread use of preimplantation and prenatal genetic screening, which in the past has been compared to eugenic practices (https://philosophynow.org/issues/22/Off-The-Peg_Offspring_in_the_Genetic_Supermarket). Furthermore, the recent UK launch of the 23andMe company in the UK shows a fast growing popularity of genetic testing. However, things are not quite as grim as GATTACA’s creators predicted. We do not live in a society divided according to genetic classes based on individual genomic profiles tested at birth; we are relatively free in our choice of professional careers and life styles; genetic knowledge does not form the basis of institutional decision-making. This essay focuses on the problem of genetic discrimination in employment – an issue prominent in the film, which has so far remained at the periphery of public debate, but which still poses challenges to governments, regulators, and societies today.
GATTACA was released in 1998, at a time of particular optimism as well as anxiety associated with the advances in genetic and genomic science. The 1990s marked the increasing popularity of the Pre-implantation Genetic Diagnosis. In February 1997 ‘Dolly the sheep’ – the first mammal cloned from an adult cell – was born. It also became clear that the Human Genome Project (HGP), launched in 1990, would be completed much earlier than expected, by the end of the 20th century. On the one hand, scientists were soon expected to read ‘the book of life’ and unlock the essence of humanity. There was a promise of ‘a cornucopia of new drugs’ and ‘personalised medicine’. On the other hand, ‘[t]here was the frisson of fear that a genetic helotry would be created, doomed by its DNA to second-class health care, education and employment.’ This second vision, so blatantly portrayed in the film, is closely related to the concepts of genetic essentialism and determinism, which treat genetic information as an essential determinant of human existence.
Inevitably, scientific advances that happened at the turn of the century have raised significant human rights concerns about possible conflicts between values such as respect for human dignity, privacy, autonomy, personhood, and freedom of research or public interest. This led to the adoption of a series of human rights documents by international community. Among them there were two UNESCO Declarations on Human Genome and Human Rights (1997) and Human Genetic Data (2003), and the UN Declaration on Human Cloning (2005). The reaction in Europe was bolder. The Council of Europe managed to adopt a legally-binding treaty, the Convention on Human Rights and Biomedicine, signed in Oviedo in 1997, and subsequently accompanied by a series of additional protocols (e.g. Additional Protocol on Genetic Testing for Health Purposes (2008)). Provisions addressing issues of biomedicine were added to the EU Charter of Fundamental Rights (2000), which entered into force in 2009.
A ban of genetic discrimination was perceived as an important element of these laws, echoing the fears expressed in GATTACA. Art. 6 of the UNESCO Universal Declaration on Human Genome & Human Rights (1997) stipulates that: ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Similar provisions prohibiting discrimination against a person on grounds of his or her genetic heritage and genetic features have been introduced to of the Oviedo Convention (Art. 11) and of the EU Charter (Art. 21(1)). Subsequently over the years, many (although not all) national governments have taken legislative steps to regulate issues concerning the application of genetic science and use of genetic information.
And then it all went terribly quiet. The Human Genome Project has not delivered its bold promise/threat of the ‘self-understanding of the species’ It turned out that human genome consists of only approximately 20,000-25,000 protein-coding genes (rather than 100,000 originally estimated and only 10,000 more than found in a fruit fly). The drugs did not appear. Nor did personalised medicine. Neither did ‘designer babies’ or the genetic underclass. Instead of simple inheritance mechanisms based on the number of genes, the research revealed complex interdependence and dynamic interactions between genetic information and environmental factors. This proved to be an important change in theory and practice. As noted by Nikolas Rose: ‘the genetic code is no longer thought of as a deep structure that causes and determines, but rather as only one set of relays in complex, ramifying, and non-hierarchical networks, filiations, and connections.’ Susan Oyama argued that these changes in understanding patterns of inheritance will eventually lead to a shift: ‘from genes and environments to a multiplicity of interconnected entities, influences, and environments’. Therefore, although according to Michel Morange, many post-genomic technologies are still based on reductionist assumptions of some kind, there is an emerging trend that acknowledges the need for a holistic vision of life. These developments seriously undermine not only the vision presented in GATTACA, but also national and international laws based on ‘genocentric’ dogma.
First of all, they impose a distinction between genetic and non-genetic factors – a distinction which is clearly not the crucial one. They ignore the fact that the very notion of genetic data is systematically unclear. Separating ‘genetic’ information from other ‘health’ information in medical records imposes double standards of legal protection of personal data. It is true that genetic code cannot change over the course of time, but nor can other medical data (e.g. HIV carrier status). In addition, ‘exceptionalist laws’ disregard the fact that genetic data are not a homogenous category, as gene penetrance and susceptibility for disease vary substantially from one condition to another. Genetic tests give an indication of processes which have not yet been understood and deal with susceptibility and probability which is not yet well understood. Finally, placing emphasis on genetic determinants might result in the reinforcement of genetic stigmatization and exclusion, since the perception of genetics and genomics is burdened by misconceptions of biological determinism and reductionism. All this raises a difficult question of how necessary and effective these laws are in areas such as employment or insurance. Perhaps countries that have taken a different regulatory path, like the UK which refrained from adopting specific legislation concerning genetics and genomics, have made the right decision?
In the UK issues concerning genetics can be resolved by reference to general statutes, including the Data Protection Act 1998, the Human Rights Act 1998, the Human Fertilisation and Embryology Act 1990, the Abortion Act 1967, and the Equality Act 2010. The only statute explicitly referring to genetic information is the Human Tissue Act 2004 which makes it a criminal offence to analyse DNA without appropriate consent given by the person from whom it has been derived. Specific guidance concerning genetics is to be found in codes of practice, guidelines, and policy instruments which are not legally-binding and rarely enforceable in courts. For instance, the UK Government and Association of British Insurers (ABI) have agreed to a moratorium on the use of predictive genetic test results. This document is a voluntary commitment which has been recently renewed to 2019. No equivalent exists in the area of employment. In fact, in its recent Report on Genomic Medicine the Science and Technology Committee 2008/09 claimed that the uncertain predictive value of tests for common complex disorders means that the information derived from them would be of little value in the employment context. The Report referred to the Information Commissioner, who stated that ‘while information, obtained through genetic tests, is useful for medical purposes, it is too intrusive and the information’s predictive value is insufficiently certain to be relied on to provide information about a worker’s future health’. Consequently, the Committee concluded that they ‘are not persuaded that there is sufficient evidence at this stage to warrant legislation against genetic discrimination either in the workplace or generally. But rapid advances in genetic science mean that there is a continuing need to monitor the situation.’ Perhaps the time for reconsideration has just arrived…
Data presented only three months ago at the Astellas Innovation Debate hosting Baroness Helena Kennedy, QC, Vice President of the Patients Association and former Chair of the Human Genetics Committee, (http://www.innovationdebate.com/news/genetic-screening-for-workers-a-panacea-or-a-pandoras-box) suggest that reductionist assumptions still prevail. Although most businesses (72%) support European legislation prohibiting them from gaining access to their employees’ genetic data, one in five employers (22%) admitted that an employee who revealed his/her greater genetic risk of serious illness would consequently also run a greater risk of redundancy and become less eligible for promotion. To retain and attract top talent, a quarter of UK businesses would extend health screening into genetic testing. It is only the fear of legal repercussions that is an inhibiting factor for 76% of employers. As mentioned earlier, in the UK these concerns are unfounded. The prohibition of discrimination on the basis of genetic features guaranteed by the EU Charter of Fundamental Rights applies only to cases which have an EU dimension. Although the scope of EU law has been growing, there are still instances in which it would be absent. In the UK there is little to prevent employers from taking genetic tests into account in the recruitment process. The Equality Act 2010 prohibits discrimination on the basis of protected characteristics, but these include present oractual and notfuture or potential disability. Although the Human Tissue Act 2004 prohibits DNA analysis without consent, one might wonder to what extent a ban like this would be effective in the context and realities of employment relationships.
The utility of most of the information obtained from genetic tests is likely to remain limited for some time, because as mentioned above, genetic tests are still relatively expensive and do not offer sufficient degree of certainty. Similar information can be derived from family histories (and this is one of the main reasons why insurers have agreed not to use DNA analysis in calculating risks). However, the availability of genetic data is growing rapidly. Although the HGP has failed to deliver all its promises it had important practical implications. The findings of the HGP led to the development of sequencing and computing technologies that make it possible to establish new links and interactions between the large amount of genomic, phenotypic and environmental information. Thanks to ever cheaper and faster next-generation DNA mega-sequencing technologies private companies provide genetic testing for over 100 traits, diseases and DNA ancestry. This genomic sequence information combined with other data is freely available on the Web, to people who are not subject to safeguards and professional codes of conduct Furthermore, genetic testing started shifting from identifying single genetic mutations to tests for multiple gene variations, and adverse health conditions, including diabetes, breast and prostate cancer, Alzheimer’s disease, obesity, and many more. . It might be increasingly tempting for the employers to get access to this type of data. The lack of understanding of the complexities and probabilistic nature of genetic information may lead to misinterpretation and fatalism and, thus, also to discrimination.
Even though, the adoption of genetic discrimination laws has been rejected as a regulatory approach for good reasons and any laws focused exclusively on genetics would be a mistake, it does not mean that the existing legislation is sufficient. The current law does not address the challenge of the growing availability of genetic testing and the growing awareness of the value of predictive information (genetic or otherwise). It does not afford protection to actual and potential employees with genetic predisposition to illnesses which might (or might not) materialise in future. One way to address this gap would be to design legislation around the notion of ‘predictive information/testing’ rather than ‘genetic information/testing’ and contextually sensitive (different rules should apply in the context of health care, research, insurance, employment…). However, an equally interesting and perhaps more pertinent question that arises in this respect is that about the role of law in the regulation of medicine and science. At which point does law become a necessary tool to guide scientific development? How important is law and legal consciousness in society so heavily reliant and focused on professional self-regulation? What is special about law as a normative system apart from the fact that its norms carry the threat of sanction? Finally, for lawyers it is increasingly difficult to identify legal norms and distinguish them from other forms of governance and regulation, because rights and obligations are increasingly entangled in a complex web of national, international, and transnational instruments and loci of authority. These are difficult legal and political questions that have to be addressed by society, if we want to ensure that GATTACA’s dystopian world does not come true both in near and in distant future. They extend far beyond the realm of science. Scientific advances, however, constitute an excellent starting point for discussion.
 Dolly the sheep was honoured with her very own blue plaque marking her short life in Edinburgh in February 2015.
 A special report on the human genome: Biology 2.0, The Economist, 17.06.2010, available via: http://www.economist.com/node/16349358.
 J. Habermas, The Future of Human Nature, Polity Press, 2003.
 P.E. Griffiths, ‘Lost: One Gene Concept. Reward to Finder’, 17 Biology and Philosophy (2002), 271–283.
 N. Rose, The Politics of Life Itself. Biomedicine, Power, and Subjectivity in the Twenty-First Century, Princeton University Press 2007, 16.
 S. Oyama, P. E. Griffiths, and Russell Gray (ed.), Cycles of Contingency: Developmental Systems and Evolution, MIT Press 2001.
 Science and Technology Committee, 2nd Report of Session 2008–09, Genomic Medicine, HL Paper 107–I http://www.publications.parliament.uk/pa/ld200809/ldselect/ldsctech/107/107i.pdf
 Ibidem,para. 6.36.
 Ibidem, para. 6.40.
This film is a reflection of discrimination in the work environment, and the things you need to do in order to gain access to the career you want. For example, sometimes female writers have to change their names to sound more masculine in order to sell more books. As mentioned in a Wikipedia article for J. K. Rowling:
“ Although she writes under the pen name “J. K. Rowling” (pronounced rolling), her name, before her remarriage, was simply “Joanne Rowling”. Anticipating that the target audience of young boys might not want to read a book written by a woman, her publishers asked that she use two initials rather than her full name.”
In the film Vincent had to go through changes in order to become an astronaut. He meets a genetically superior male named Jerome and uses his identity to get into a prestigious program. Jerome was in a swimming accident in a different country and is currently paralyzed so he willingly gives Vincent his genetics. Vincent has to do whats necessary to move up in society because at birth he was deemed in-valid based on his natural genetic make up. Outside of the film, in the socioeconomic aspects of society, discrimination happens all of the time. Even though, like the film, it is illegal to discriminate against someones race, gender, or genetics it still happens and has now become a norm in society. As quoted from The Theme Foundry:
“Gattaca is a powerful movie with subtle hints throughout that point towards oppression of a different kind. This is a world that hoped to reach a utopia but went terribly wrong. The scenes are carefully crafted and the two scenes mentioned in this paper are a few of many more that scream out the dystopia. Extremes in technology and genetic engineering does not alter the “imperfections” in the world. Some things are meant to be left natural.”
Although Gattaca didn’t do well at the box office, this film is still considered a cult classic with valuable information as far as the closeness of eugenics to being a reality. This film makes a compelling case that race, class, and gender play a significant role in society and so does the discrimination that follows these themes. Ultimately, everyone in society is judged based on these three factors. The genetically superior characters in the film Gattaca tried to eliminate judgement or discrimination against race, gender, class, or anything that could make someone in-valid. However, the characters still prove that “bad genes” still find their way into a “perfect body”.