‘Gender verification’ in sports

For about 100 years of sport history, men and women have been competing separately in most athletic events. The separation of the sexes is understood as a fundamental issue of competitive justice as genetic dispositions accord a physical advantage to the male athlete. In female competition, ‘gender verification’i by genetic testing to detect fraudulent males is a common practice. South African runner Caster Semenya, the winner of the 800 m final at the World's Athletic Championship in Berlin 2009, was subjected to such a testing, as her female sex had been questioned on the basis of her physical appearance.1

To protect individual privacy, dignity and self-determination, genetic tests in a medical setting and at the workplace are regulated by laws and international declarations. The Unesco Declaration on Human Genetic Data demands free, informed and express individual consent to the ‘collection of human genetic data’ (Article 8a).2 Data must not be used in a way ‘that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual or for purposes that lead to the stigmatisation of an individual’ (Article 7a).2 An expert group of the European Commission recommended that in the context of genetic testing ‘the importance of a patient's right to know or not to know be recognised’.3 Many Western countries have passed similar genetic privacy laws.4 5

Would it be appropriate to subject genetic testing in sports competition to the same precautionary principles? Would it be necessary to respect the genetic privacy rights of athletes? After all, it cannot be considered discrimination to exclude someone from competition due to the wrong sex as the division by sex is a fundamental prerequisite of fairness. Close physical inspection to determine the sex of a competitor is considered humiliating by the majority of athletes. Why not use medical genetics to unobtrusively and objectively solve the problem and prevent cheating?

In this paper, I argue that genetic testing in women's sports competition does not make an exception to the rule. I will show that the current practice of athletic associations to largely ignore the right of suspected competitors not to know does not comply with prevailing ethical and legal provisions on the protection of genetic privacy. In fact, they are an excellent example for the importance of genetic privacy laws. I will show why it is not only eugenic ideologies we should be afraid of but also the power of common, unquestioned distinctions of everyday life we thoughtlessly make use of although they are false.

The right not to know

Genetic data have a significant potential to cause individual harm. From patients with the genetic trait for Huntington's disease we have learnt that knowing one's genetic susceptibility may be a curse rather than a blessing. Genetic information “have a special status on account of their sensitive nature since they can be predictive of genetic predispositions concerning individuals … they may have a significant impact on the family, including offspring, extending over generations, and in some instances on the whole group; they may contain information the significance of which is not necessarily known at the time of the collection of biological samples; and they may have cultural significance for persons or groups”.2

Harms are often not balanced by a significant practical relevance of the information obtained, and knowledge of susceptibility frequently does not come along with the possibility to react and minimise the potential risks.

International ethical and legal regulations therefore ascertain a right not to know based on the right to (informational) self-determination highly cherished in liberal democratic societies. Given the high potential of individual harm, the right not to know in medical genetics also includes the right to decide whether third parties should gain knowledge of a certain genetic condition. Bioethicist and lawyer Lori B Andrews considers medical information private and substantiates a fundamental right of ‘control over the uses of one's own genetic information’.6

The right not to know applies to all types of knowledge that are personal, yet not self-evident, that is, if there is a reasonable possibility of not knowing. It is a relative right as it has to be balanced against the right of others to know about a certain condition.7–9 Yet, at first view, knowledge about one's sex does not seem a perfect candidate for the right not to know. In everyday life, this is the most simple and evident distinction to be made, and children at the age of four or five are able to do the job. Although it is certainly highly personal information, it is commonly—and rightly—treated as a public fact, and numerous social activities like education, mating or work depend on it.

However, the distinction between the male and female sex is not as simple as yes or no. The sex of a person is determined by a number of factors from genes to hormones, internal and external genitalia, as well as psychic factors, each of these being able to induce a serious variation in normal development.10 One of the more frequent variations is androgen insufficiency syndrome (AIS) in which a child is born with an X and a Y-chromosome, the latter usually determining the male sex; but as body cells are insensitive to testosterone, the development goes in the direction of the female type. Babies with AIS are raised as girls and have a female phenotype but no uterus. Depending on mutations in the receptor gene, hormone insensitivity can be only partially expressed, resulting in partial AIS (pAIS). Some rare genetic variations can lead to combinations of male and female body characteristics, for example, individuals with XX/XY-chromosome mosaicism having two types of cells with either one or the other characteristic. In these cases, gonads can be dysfunctional and development can lead to varying degrees of female or male phenotypes.10

These conditions are called intersex or differences of sexual differentiationii (DSD). The biological sex of an affected person can be neither apparent nor easy to determine. The ratio of persons affected in sports is higher than in the general population. Evidence gathered in a number of international sporting events indicate a prevalence of about one XY-chromosomal condition per 500 female competitors.11

Given the overwhelming social importance of the binary sex classification in human societies, the fact that the sex of a person is indeterminate can elicit numerous individual and social conflicts.12–14 In these cases information on the genetic sex of a person can become highly private, sensitive and worthy of protection. When medical attendance is sought, confidentiality, respect for privacy and autonomy are therefore acknowledged as important ethical considerations.15–17

Likewise, sex determination in sports can reveal genetic and other medical information that is not self-evident, but personal, intimate and has an immense potential to raise severe identity problems. The information gained meets the criteria set up by the Unesco Declaration on Human Genetic Data: it is of a sensitive nature, it exerts a significant impact on the family, particularly on spouses, and it has a high cultural significance for persons or groups.2 For intersexed persons, genetic testing might thus infringe on personal rights to privacy. A right not to know therefore could be attributed to them.

Latency of one's genetic sex traits due to intersex conditions is an empirical prerequisite for the right not to know. Intersexed persons, however, may also display phenotypic characteristics that are less latent like body build or muscular growth. Yet, in sports many competitors have unusual physical traits while only a small number of them have DSD. The appearance of a person alone does not allow for a diagnosis of DSD nor does it create an imminent harm for the person concerned. Genetic information, though, is different from this type of knowledge as it is latent and has a significant potential to harm.

However, the right not to know is relative with regard to third party interests or rights. Sports rely on the distinction between male and female competitors. It is a generally and widely accepted view that a division of sports competitions by sex enhances fairness. Sports competitors and sports associations have a justifiable interest in having the sex of athletes determined. This interest thus has to be weighed against the harm caused by the genetic information, harm in this case implying other negative effects than just those resulting from justified exclusion from women's sports.

Harm

For female competitors who are diagnosed as having a Y-chromosome this information, without exception, comes as a shock. Sex and gender identity is one of the defining and most fundamental characteristics of personhood. If it is questioned, psychic stability is seriously endangered. In a qualitative empirical study, the trauma inflicted by the diagnosis DSD was comparable to that from physical or sexual abuse.13 Sportswomen, indeed, are shattered to learn about their chromosomal condition. Inability to continue to exercise, feelings of shame, depression and suicide attempts are to follow.11 18 19 Often team medical attendants are not prepared to handle this situation adequately.11 Experts on these conditions are rare and some give incomplete or wrong information to the athletes in an awkward and deeply embarrassing way. Extensive diagnostics to specify the particular condition and, hopefully, exonerate the woman will take months, and the majority of women do not have the courage to continue and learn even more terrifying things about their already wrecked identity.11

Since its first introduction in the late 1960s, medical experts have therefore thoroughly criticised sex-chromosome screening because individuals were seriously harmed and also because most results are irrelevant to sports. For example, in the summer Olympics 1996 in Atlanta, the medical geneticist responsible for the screening of all female athletes identified eight cases of non-gender-concordant sex chromosomes. None of the women were excluded from competition.20 At least three of them, one with AIS, one with pAIS and a third with 5-alpha-reductase mutation, had not been aware of their conditions.20 However, all of them now have to bear the consequences of this information. Team physicians were informed about the results and it is unclear what happened in the aftermath to those tested positively. Informed consent was requested for further medical examinations, but since this took place right before the opening ceremony, voluntariness of consent can be questioned. Consequences of a waiver of consent are not specified, but it is obvious that the required gender verification certificate might not have been issued. Elsas et al conclude that screening should be abandoned because of the great potential to harm and cause discrimination.

The International Olympic Committee tentatively abolished screening in 1999.21 The International Association of Athletics Federations (IAAF) had already given up the practice of screening as early as 1992. At big international competitions, like the Olympic Games, the situation is now better for women with AIS, pAIS or Turner Syndrome, provided that they are already informed about their condition. A ‘Policy on Gender Verification’ adopted by the IAAF rules that these intersex conditions do not bring about an unfair advantage and that carriers are eligible for female competitions.22 The IAAF Policy now demands a case-by-case analysis, but does not give an indication on how to evaluate each case.

The risk for women to be excluded from big competitions just because their cells display a Y-chromosome thus has been lowered. Whereas at the level of international organisations, knowledge of intersex conditions is now fairly satisfying, this is still not the case at a national level, particularly in those countries where healthcare systems are badly developed. National sports associations continue to require tests for high-performance athletes to exclude sex identity problems and fulfil the policy criteria. In some international contests, screening practice has not yet been abolished. In countries where gender differences are fixed, and indeterminate sex is socially problematic, female athletes suffer from the consequences of insufficient knowledge and serious questioning of their sexual and personal identity. For example, in 2006, the Indian 800 m runner Santhi Soundarajan won a silver medal at the Asian Games, in Doha, Quatar. She underwent a sex test revealing her having a Y-chromosome. Shortly after the event, and although no thorough examination had been possible until then, Dr Manmohan Singh, the chief doctor of the Indian Olympic Association, wrongly stated her gender to be ‘not female but male’.23 A year later, Santhi Soundarajan attempted suicide.24

Today, sex tests are obligatory if the sex of an athlete is challenged by competitors. Due to this new policy, ‘sex impostors’ are now at risk of being exposed by competitors who feel cheated and seek revenge. Under these circumstances it is almost impossible to keep confidentiality until final results have been achieved. The harm to challenged athletes cannot be undone, even if medical examinations will later on show that the challenge was unfounded. Damage to privacy, honour and self-esteem of the person concerned is inevitable.

This happened to South African Caster Semenya. The young woman waited for nearly a year for a decision on her being eligible for women's sports. In the meantime she has suffered from demeaning attacks in the press, insinuating her not being ‘a real woman’. For more than 10 months, most intimate aspects of the private life of the 18-year-old were publicly discussed in newspapers all over the world, her mother and father being interviewed on anatomical details of her body. On 6 July 2010, the IAAF finally issued a dry statement that the association ‘accepts the conclusion of a panel of medical experts that she can compete with immediate effect’.25 However, nobody will erase the innuendoes from public memory.

Discrimination

The level of discrimination against suspected athletes has to be inferred from those cases that have attracted publicity. Particularly in the first decades of the screening period, the detection of a Y-chromosome was often equated with being a man and often, too, with cheating. Exclusion from the team followed soon. In 1991, Ferguson-Smith and Ferris reported about at least 17 intersex athletes having been disqualified in an unjustifiable way.26 These cases presumably are but the tip of the iceberg, as decisions have only become publicly known if either the athletes themselves or the medical experts providing sex testing talked about it, both of which having been rather the exception than the rule.

The Spanish hurdle runner María Martínez-Patiño broke this conspiracy of silence. At the World University Games in Kobe, Japan, in 1985 she was tested to have AIS and was disqualified. But she sued her national federation and spoke publicly about the extent of harm and discrimination inflicted on her:

“I was expelled from our athletes' residence, my sports scholarship was revoked and my running times were erased from my country's athletics records. I felt ashamed and embarrassed. I lost friends, my fiancé, hope and energy”.27 28

As in Martínez-Patiño's case, team representatives are often rather inclined to get rid of an embarrassing affair than to give the athlete a fair chance to fight for their case. Cytogeneticist Malcolm Ferguson-Smith, who has served as medical expert at several international competitions, states that the Spanish runner's case illustrates ‘the level of ignorance among sports physicians about the eligibility rules, and the trauma experienced by individual athletes caught by an unjust and ineffective system’.11 As early as 1986, the Finnish medical geneticist Albert de la Chapelle had already concluded that ‘the present screening method is both inaccurate and discriminatory’.18 In 2008, Ritchie et al summarise that ‘compulsory gender verification seems unfair, humiliating and unproductive in the majority of situations’.29

However, mass media explicitly or implicitly join the hunting party. Because of their affinity for short and pointed phrases and the alleged ‘sexual’ nature of the problem, journalists are tempted to make fun of it: ‘She has been accused, in short, of being a he’, ‘Sex-test failure attempts suicide’.23 24 Until today, mass media have a tendency to question the ‘true’ femaleness of every sportswoman diagnosed as having XY-chromosomes regardless of what sports policies state in this case. If athletes decide not to undergo the potentially humiliating procedures of sex testing and resign from competition, this is usually cited as a proof for fraud.30 The blame, thus, is always on the woman.