This article investigates the legal implications of the use of genetic testing in sport, that is, the analysis of human DNA to detect particular genetic traits and variations, or susceptibility to conditions. As science makes significant strides in the understanding of our genetic information, the search for the genetic components which separate winners and losers in sport follows. Although the practice of genetic testing in sport is not currently commonplace, there are some examples of genetic information being used by sports clubs and governing bodies to make decisions about an athlete’s capability to perform. This article examines how this practice could disproportionately interfere with an individual’s human rights and result in genetic discrimination if information is used for selection and employment purposes. It reviews some of the hard and soft law measures that regulate genetic testing at an international, regional and domestic level. The position of sport within this regulatory framework is uncertain, given the unique way in which sports regulation functions and interacts with the law. Nevertheless, the article concludes that the tendency of the law to treat discrimination in sport differently to other areas of society could leave athletes vulnerable. Whilst genetic information may be useful for understanding genetic traits and their relationship with athletic performance, going beyond this to select athletes on the basis of genetics is discouraged and the interests of sport should be fairly balanced against the human rights of the athlete.
In 2003 the Human Genome Project achieved its primary goal of completing the sequencing of the human genome. This represented a new age in the understanding of the human body and, as a result of the findings, a greater interpretation of how an individual’s genotype can explain particular traits and conditions is anticipated. Information about our genetic make-up, individual susceptibility to certain diseases, responses to certain drugs or nutrients are readily available through the process of genetic testing. There is no consensus definition of genetic testing, but it broadly involves an analysis of human DNA to detect particular genetic traits and variations, or susceptibility to conditions.
This genetic revolution in medical practice is leading to better healthcare provisions, improved patient choice, increased research and effective treatment for disease in the future (
That said, there is often incongruence between scientific capabilities and ethical boundaries (
The competing issues surrounding genetic testing manifest themselves in the context of sport where advances in medicine, science and technology are at the forefront of understanding human athletic ability. Capturing and analysing biometric or biomechanical athlete data forms a key aspect of sport practice (
It should be noted that there is a clear distinction between genetic testing that is based on clinical scientific evidence of a gene influencing a phenotype, and a mere genetic association with a given trait. For example, variants in BRCA1 and BRCA2 genes are commonly used as screening tools for breast cancer due to their clinically proven predictive capabilities. However, no such predictive capacity has been shown in genes researched within a sporting setting, with many associations asymptomatic, without an established cause and effect. The current article focuses exclusively on genetic testing in a sport setting.
The treatment of athletes on the basis of their human traits is commonplace in sport, with sex segregation for instance, historically viewed as legitimate and necessary division for fair competition in sport. The essence of sporting activity is about challenging our physical and non-physical differences by creating conditions which separate athletes on the basis of these differences. However, at times these exclusionary practices are potentially incompatible with core human rights principles, in situations where there is no justification or legitimate basis for differential treatment (
Analyses of the current regulatory framework for genetic testing generally have been made in the literature (
This article examines the current uses of genetic information in sport. It explores some of the legal provisions that regulate genetic testing at an international, regional and domestic level, and follows with an exploration of how that framework might apply in a sporting context. Concerns about the use of genetic testing generally are being addressed in many jurisdictions through the introduction of soft or hard law measures, but the position of sport within this regulatory framework, and their handling of sensitive athlete data, remains typically unclear.
In a recent study investigating the current use of genetic testing in UK elite sport, 72 elite athletes and 95 support staff at UK sports clubs and governing bodies were surveyed. It was found that genetic testing related to sports performance and injury susceptibility does occur, albeit infrequently (
In Major League Baseball (MLB) in the USA, genetic testing was introduced to verify athlete identity and to tackle misrepresentation. Prospective players were found to be falsifying their age in order to be more attractive to MLB teams for selection (
The World Anti-Doping Agency (WADA) are a private international body tasked with creating and maintaining unified standards for anti-doping testing and the imposition of sanctions for doping violations. Their testing processes involve testing athletes as a condition of participation and gathering and storing sensitive information. Although regimes such as the Whereabouts Rule (out of competition testing) have been challenged as an infringement of human rights (
The Athlete Biological Passport monitors over a period of time, selected athlete biological variables to identify any changes from the potential effects of doping. This relies on regularly updating blood samples records. Significant attention is being paid to the use of gene therapy to enhance performance in sport. Gene doping refers to the non-therapeutic manipulation of genes to augment athletic performance in sport. WADA prohibit gene doping and gene editing and have explored ways to enable accurate detection of such methods. As an extension to the biological passport, it was reported that they are considering requiring athletes to submit a copy of their genetic code in order to monitor any variables in the athletes’ sequencing (
In the previous study, a willingness amongst elite athletes and support staff for genetic information to be used in the hope of improving sport performance and reducing injury risk was also identified (
However, there is a clash between protecting the health and well-being of an athlete, safeguarding the financial costs of teams and clubs and potentially discriminating against athletes by restricting their employment opportunities. For example, athletes’ careers have been inevitably shortened by screening for medical conditions such as Marfan’s Syndrome, rare heart conditions and the sickle cell trait (
In 2005, professional basketball player Eddy Curry Jr was forced by the Chicago Bulls to undertake a DNA test to determine susceptibility to a rare heart condition that could lead to sudden death, particularly for athletes. It was reported that the Bulls added a genetic testing clause into Curry’s new long term contract offer and offered him $400,000 annually for the next fifty years if he failed the test (
The Bulls objective was to protect Curry’s health and well-being (
The complexity of this debate is further emphasised by the introduction of mandatory athlete pre-participation screening in some countries. In 2006, American football student athlete Dale Lloyd II collapsed and died during a training session, as a result of complications associated with the sickle-cell trait. He had no knowledge that he was a carrier and had never been tested for the trait. The Lloyd family sued Rice University and the National Collegiate Athletic Association (NCAA) for wrongful death and claimed that the NCAA was negligent for failing to warn Lloyd about the risk of complications due to carrying the sickle-cell trait. Many athletes who carry the sickle-cell trait participate in athletics without any difficulties and are unaware that they carry the trait. However, some evidence suggests that high intensity physical activity can put carriers at risk (
Following the litigation, the parties eventually settled and the NCAA agreed to formally recommend that its member colleges and university athletic departments test all student athletes for the sickle-cell trait before participating in intercollegiate athletics (
Mandatory screening has saved the lives of athletes who would not otherwise have had the opportunity to be screened (
Genetic traits can also include our sex and gender. Recently, the International Association of Athletics Federations (IAAF) eligibility regulations for female classification (Athlete with Difference of Sexual Development) have been at the centre of sport debate (
In sport the recruitment and retention of employees has evolved towards a process of ‘talent analytics’ where employers use data-based predictive methods to improve the accuracy of athlete selection (
The majority of support staff and athletes in the authors’ study reported that there is a place for genetic testing in sport though opinion was divided in relation to the use of genetic testing for talent identification (should be used = 67% athletes; 48% support staff) and even selection/employment (should be used = 28% athletes; 14% support staff) (
For now, at least on the surface, the use of genetic testing precisely for talent identification and selection remains hypothetical. There has yet to be a large-scale study that prospectively identifies athletic excellence as a result of an individual’s genotype. If genetic testing were to be conducted for this purpose, it would be without scientific creditability given the lack of current scientific understanding in relation to genetics and sport performance. Although there have been some genetic variations that have been shown to potentially influence sports performance (such as the ACE II associated endurance athletes, and the ACTN3 RR associated with power athletes) (
The difficulties in assessing how genes interact with the environment, the assumption that many genes play a role in determining physical attributes, and the lack of understanding about how genetic variants interact, suggest a very limited applied use in assessing current or potential athletic excellence through genetic testing. In light of this, making determinations based upon predictive tests could be a dangerous and potentially discriminatory practice based on the limited and questionable scientific evidence (
Over time, genetic or cultural human differences have often been generalised and used as a basis for exclusionary treatment (
The imposition of genetic testing as a means of talent identification or team selection also raises issues of autonomy and consent: to what extent the athlete is free to decline to take a test or whether they would feel obliged to participate in order to secure opportunities in sport. Given media attention on sport, there is also a concern of privacy and confidentiality of information if genetic testing were to be widely used (
Overall, the examples of genetic testing in sport are rare but they do exist. As science advances, it is likely that ‘the economic incentive to discriminate based on genetic information’ will only increase (
With genetic testing in sport still in its infancy, formal regulation appears to be minimal, with medical bodies in the field currently presenting position statements on the use of genetic testing (see
In the absence of any firm sport regulation for genetic testing, current sport practices have instead been hypothetically measured against legal standards. The relationship between sport and the law is a complex one. Sport is unique because it holds significant global commercial power and has dominated many areas of social activity. Sport influences the shaping of societies and cultures, and contributes to economic growth. Given this stronghold in society and industry, the legal accountability of sports bodies and the external scrutiny of their rules and regulations receives increasing attention (
At the one end exists the interventionist model that is based upon the idea that sport serves a public function and the state has a responsibility to regulate this area through the enforcement of legislation (
In comparison, the model of non-intervention and autonomy is one where sport is considered to be a self-regulating private sphere, which is immune from government responsibility (
Outside of the sporting context, appropriate models of regulation for genetic testing are currently being sought. Key theoretical considerations in these early stages of regulation are around what needs to be protected and whether there is a need to create specific regulation for genetic testing at all (
The regulation of genetic testing and the use/storage of genetic information appears to be located in hard and soft law measures pertaining to employment and insurance, anti-discrimination, privacy and data protection, although there is a significant variation of approach between countries and across domestic, regional and international levels. A review of these instruments follow.
The Universal Declaration of Human Rights 1948 (UDHR) represents the foundation of international human rights law. It was the first instrument that set out internationally accepted basic civil, political, economic, social and cultural rights for all human beings. It serves as a framework for the enactment of a wide body of legally enforceable global human rights instruments that have translated the concepts of the document into law through the formation of treaties, principles, agreements or conventions at a domestic, regional and international level of governance (
The rights contained in the Declaration apply universally to every person ‘without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status’ (Article 2 UDHR). Whilst no explicit reference to genetics is made, attention is given to the human family and Article 1 states that, ‘all human beings are born free and equal in dignity and rights.’ Article 12 UDHR guarantees the right to privacy.
As discussed below, some countries address discrimination on the basis of genetics within existing provisions for the protection of individuals with disabilities. The Convention on the Rights of Persons with Disabilities (CRPD) is an international legal agreement that broadly categorises persons with a disability. Its purpose is to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’ (Article 1 CRPD).
The United Nations Educational, Scientific and Cultural Organisation (UNESCO) is a special branch of the UN and promotes dialogue between civilisations, cultures and people to achieve global visions of sustainable development encompassing observance of human rights, mutual respect and the alleviation of poverty (
UNESCO also adopted the International Declaration on Human Genetic Data 2003. It similarly aims to balance freedom of research with the respect for human dignity, ensuring the protection of human rights at every stage of human genetic research (collection, processing and storage of human genetic data). With a need for international guidelines in this field, the Declaration seeks to offer guidance to States in the ‘formulation of their legislation and their policies on these issues; and to form the basis for guidelines of good practices in these areas for the institutions and individuals concerned’ (Article 1a). However, it continues to be advocated that these instruments have moral, but not legal force (
In 2007, the Organisation for Economic Co-operation and Development (OECD) introduced best practice guidelines for quality assurance in molecular genetic testing (
The World Medical Association (WMA) is an international organisation representing physicians and focused on ensuring high standards of ethical behaviour and care. In official alliance with the World Health Organization (WHO), the WMA provide ethical guidance to physicians through the implementation of its Declarations, Resolutions and Statements. Their statement on genetics and medicine highlights the importance of ensuring informed consent when genetic testing is carried out (
The International Federation of Human Genetics Societies aims to provide a platform for communication across the international community of human geneticists. Members of the Federation include the American Society of Genetics, the European Society of Human Genetics, the Human Genetics Society of Australasia, the African Society of Human Genetics, the East Asian Union of Human Genetics Societies and the Asia-Pacific Society of Human Genetics.
Europe was first to gain a comprehensive regional treaty in the form of the European Convention on Human Rights 1950 (ECHR). The effect of the Convention has been underpinned by the fact that members of the Council of Europe are required to be signatories to it and to abide by its rights and protective provisions. These are ultimately guarded by The European Court of Human Rights (ECtHR), to whom individuals may take complaints about violations which have not been domestically remedied.
In some circumstances Member States may restrict these rights if that restriction is necessary in a democratic society. Applying the necessity test is very much a case of analysing proportionality (
The Council of Europe’s commitment to the regulation of genetic testing is evidenced by the enactment of the European Convention on Human Rights and Biomedicine Convention 1997 (The Oviedo Convention), which is considered to be the only international legally binding instrument in the field of biomedicine (
Core principles of the ECHR are adopted within the Convention, which aims to protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine (Article 1). Article 10 protects the privacy of an individual in relation to his or her health. Article 11 prohibits discrimination on the grounds of genetic heritage. Furthermore, Article 12 states that predictive tests may only be administered for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling. It has been observed that this would therefore exclude tests which were conducted for sport performance (
In 2016 the Council of Europe produced recommendations for the use of personal health related data for insurance purposes, which included data from genetic tests. The proposal is that Member States take appropriate measures to ensure respect for the fundamental rights of persons, without discrimination, in the context of the insurance contracts (Recommendation CM/Rec(2016)8).
In the European Union, the Treaty of Lisbon which came into force in 2009, has firmly enhanced the presence of fundamental rights in the EU (
The Charter of Fundamental Rights of the EU 2000 now has full legal status (Article 6(1) TEU) and under Article 6 (2) TEU. The legally binding Charter is the first formal EU document listing civil, political, economic and social rights to which EU citizens should be entitled. Article 3 concerns the right to the integrity of the person and signposts particular attention to this protection in the fields of medicine and biology. In addition, Article 21 expressly prohibits discrimination on the grounds of genetic features and demonstrates an awareness of genetic discrimination at the EU level (
The General Data Protection Regulation 2016/679 (GDPR) imposes minimum harmonised standards for the handling and processing of data across Europe. It seeks to protect individuals and provide them with more power over their personal information. Article 9 GDPR specifically protects the processing of personal genetic, biometric or health data.
The regulation of health-related genetic testing in the EU is broadly captured under legislation on
The UK Human Rights Act (HRA) recognises the rights of the ECHR as an integral part of domestic law. The HRA gives effect to the ECHR by imposing an obligation on public authorities to comply with Convention rights. The enactment of the UK Equality Act 2010 (EA) harmonised discrimination law by consolidating and repealing previous discrimination legislation. The Act protects individuals from discrimination on the basis of their disability, gender reassignment, race, sex, age, marriage and civil partnership, pregnancy and maternity, religion or belief and sexual orientation. During the consultation process of the EA, genetic predispositions were considered for inclusion. In 2007, the former Human Genetics Commission (HGC) urged the government to add genetic discrimination to the Equality Bill following concerns about the treatment of individuals in employment and in insurance, but this was rejected (
The Human Tissue Act 2004 in the UK aims to regulate activities involving the use and storage of human tissue and organs. Under s.45 of the Act it is an offence to analyse DNA of any bodily material, without qualifying consent of the living person (unless for an excepted purpose). Bodily material is material that has come from a human body and consists of or includes human cells. Genetic testing companies are therefore obliged to comply with the provisions of the Act.
The Data Protection Act 2018 is the implementation of the GDPR and aims to ensure that those responsible for handing personal data, follow strict data protection principles.
Much of the policy at the domestic level seeks to protect genetic discrimination in employment and insurance. Non-legislative soft law measures are in place such as the UK Concordat and Moratorium on genetics and insurance which has been extended until 2019 (
Some countries such as Australia are yet to introduce any explicit policy on genetic discrimination in insurance and employment and instead amended the Disability Discrimination Act 1992 to include ‘genetic predisposition’ in its definition of disability. In Ireland genetic testing is also covered within the Disability Act 2005. Extending existing disability discrimination legislation in this way may be deemed a better solution to regulation since practices of genetic discrimination is currently rare.
Comparatively, other countries have enacted specific legislation to directly address the increasing risks and fears of genetic discrimination in insurance and employment. Many European countries such as Germany have banned the use of genetic tests (Human Genetic Examination Act 2010; a comprehensive comparison of EU countries can be found in
Significant attention has been given to the US Genetic Information Non-Discrimination Act (GINA) 2008 which was designed to prohibit genetic discrimination in health insurance and employment. Prior to GINA, the regulation of genetic discrimination varied across states. At a federal level the Americans with Disabilities Act 1990 (ADA) was in place to deal with any claim for discrimination on the basis of genetic information in employment, although no precedent existed (
GINA provides privacy protection by placing restrictions on gathering information, and anti-discrimination protection by limiting employers from discriminating on the basis of genetic information. Title I protects individuals from genetic discrimination in health insurance and Title II makes it unlawful for employers to use genetic information in employment related decisions such as retention and recruitment, or employment opportunities and privileges (s. 202a). GINA also makes it illegal for an employer to request or require genetic information from an employee, although there are limited exceptions to this which are related to consent or compliance with law (s. 202b).
Overall, there is a growing awareness of genetics regulation at the international, regional and domestic levels. The framework is a little complex, which may be a consequence of the lack of consensus definition in the area (
There is also a body of medical provisions at all levels seeking to ensure that genetic testing companies use accurate information and do not mislead their customers. Guidance for good practice and good governance in the field is also being developed. Significant updates in data protection legislation introduce strict principles for the use of genetic data.
Centred on insurance, health care and employment, there is country specific legislation prohibiting or limiting genetic discrimination. It is argued however, that existing anti-discrimination and privacy models, as opposed to explicit genetic discrimination provisions, are sufficient to deal with current regulatory needs since there is little evidence of actual genetic discrimination and there is a chance that regulation may instead exaggerate the issue (
It is unclear how these measures, if any, capture the use of genetic testing in sport, and how they might protect an athlete if their genetic information was used to discriminate against them. Such a restriction would need to satisfy principles of proportionality, namely whether the limitation pursues a legitimate objective, whether the means of the objective is rationally connected, whether the limitation is necessary to achieve its purpose, and whether there a fair balance between the benefits and the limitation (
There is a general reluctance to hold private sports organisations/governing bodies/employers legally accountable, particularly in the context of discrimination where legislation tends to apply to public bodies (
As mentioned earlier, this is not necessarily a new problem, and differential treatment on the basis of human characteristics is an unconsciously accepted practice since this goes to the heart of sport and its very purpose. Yet there is a balance struggle between inclusion and exclusion when this treatment becomes unreasonable (
Using the courts to challenge sport practices under human rights provisions is not common and usually unsuccessful. For instance, in
An athlete was unsuccessful in his claim of disability discrimination in the US case of
The legal decision turned upon whether Knapp was disabled under the terms of the Act. The court concluded that as a matter of law Knapp was not disabled within the meaning of the Act and no violation had occurred. They commented that ‘legitimate physical qualifications may in fact be essential to participation in particular programs’ (Case, 483). In reaching their decision the court highlighted that the university’s decision may not be the right one, but it is not an illegal one under the Act.
The assessment of risk was a key sporting issue in the case. The parties disagreed upon the acceptable level of risk for Knapp to compete. On this point the court held that it is for the team doctors and universities to make its own medical determinations, provided that reasonable consideration of sufficient evidence specific to the individual and the potential injury has been conducted. Although the court affirmed that Knapp is an adult, capable of assessing whether competing is worth the risk to his life, and if that risk is acceptable, this was not a consideration in the final decision, possibly because it was not the legal matter before them. The judges did however highlight that eligibility of athletes who may risk future injury should not be founded upon paternalistic stereotypical concerns, and should instead be based upon objective evidence.
Since its enactment much has been written about GINA’s potential applicability to sport, but its current impact is unclear, particularly since no sport case has arisen (
Indeed, one of the consistent themes in some of the discrimination related cases, is that although discriminatory practices are recognised, the breach of human rights is justified as necessary and legitimate for sport, since the essence of sport is about discriminating in a sense. In this context, it may well be reasonable to exclude or treat an individual differently on the basis of their physical differences, in order to protect the essence of sport. It is questioned whether regulation of genetic testing in sport is at all necessary since genetic information is arguably the ultimate identification tool for potential ability (
Another justification might be that sport deserves special treatment by the law because of the economic implications of genetic testing. Sport employment may be considered unique in this context because athletic ability, peak health and exceptional performance are necessary employment requirements (
However, this exclusion can become unreasonable and compromise an athlete’s human rights when genetic information/testing is misused to treat athletes differently on the basis of their genetics. In order to satisfy human rights provisions detailed above, sport decision makers need to ensure that they are pursuing a legitimate aim, and the means adopted are appropriate for achieving that aim. Given the current limitations of genetic testing, and the inconclusive evidence of associations between genetic traits and athletic ability, it would be misleading and inaccurate to make decisions about employment and selection on the basis of genetic information (
That said, despite the stereotypical assumptions of differences between men and women, including their misconceived suitability to particular sports, the UK EA sport exemption is justified on the basis that some sports are gender affected ‘in circumstances in which the physical strength, stamina or physique of average persons of one sex would put them at a disadvantage compared to average persons of the other sex as competitors in events involving the activity’ (s. 195(3) EA). The law would also need to play a role in ensuring that misconceptions about genetics and sport are not used to treat sport differently in genetics regulation.
Even if a stage is reached where certainty is guaranteed and the research investigating genetic associations with sporting traits improves so that genetic testing is based upon reliable evidence, this leads to wider theoretical questions about the heart of sport and to what extent the essence of unpredictability is to be eliminated from the activity, if athletes begin to be selected on the basis of their specific genetic traits. Placing importance on genes in sport, ignores the many other factors that contribute towards success and performance. From a discrimination perspective, conflicting issues would still remain.
This article has reviewed the growing body of international, regional and domestic regulation in place for genetic testing. Both hard and soft law measures exist to address our fears about potential genetic discrimination. The protection of human rights is at the heart of this framework. In the search of the qualities of a great athlete, it is likely that genetic testing in sport will advance considerably in the future and this will certainly challenge the boundaries of human rights. This article has provided examples of how genetic information is already broadly used to influence current sport practice and how those challenges already present themselves.
In principle, if genetic testing were to be introduced to determine employment or selection, from a legal perspective this would constitute an interference with human rights. Even if the sporting aims of protecting the health of the athlete or ensuring fair competition constituted legitimate aims, the lack of scientific accuracy around genetic testing in sport, would render the human rights restriction disproportionate. If firmer evidence for differential treatment on the basis of genetics is available in the future, the rights of the athlete will still need to be balanced since it would be an intrusive act.
However, in practice, this article has emphasised the complex relationship between sport and the law, and the uncertainty around how sport might be captured by the regulatory framework currently in place for genetic testing. The obligation of sport to comply with the rule of law is part of a broader ongoing debate. The tendency of the law to treat discrimination in sport differently to other areas of society is leaving athletes in a vulnerable position.
Nevertheless, this investigation has raised critical issues around the use of genetic testing in sport. Understanding our genetic traits and their relationship with athletic performance is a powerful tool and any such research is encouraged. Yet going beyond this and using such information to select athletes on the basis of genetics is problematic and discouraged. Position statements reflecting this stance are useful, but they represent a mild approach to this issue. The potential of the law to assist in the framing of good governance in this area is demonstrated by the existing measures. Although they may be piecemeal, there are some useful legal principles that should be adopted by sport, particularly the need to ensure that the interests of sport are appropriately balanced against the rights of the athlete.
The authors have no competing interests to declare.