GHJP WMA Semenya Intervention_Grand Chamber_012024 Final

PDF Upload


Application No. 10934/21
IN THE EUROPEAN COURT OF HUMAN RIGHTS
BETWEEN
Semenya,
Applicant
– and –
Switzerland,
Respondent
_____________________________________________________________________
SUBMISSIONS ON BEHALF OF THE WORLD MEDICAL ASSOCIATION
AND
THE GLOBAL HEALTH JUSTICE PARTNERSHIP
_____________________________________________________________________
Otmar Kloiber
Frank Ulrich Montgomery
The World Medical Association
13A, ch. du Levant
01210 Ferney-Voltaire
France
Alice M. Miller
Global Health Justice Partnership
Yale Law School
127 Wall Street
New Haven, CT 06511
1
INTRODUCTION
1. These written submissions are made by the World Medical Association and the Global
Health Justice Partnership pursuant to article 36 § 2 of the Convention for the Protection
of Human Rights and Fundamental Freedoms (the “European Convention on Human
Rights” or “ECHR”) following leave granted to intervene as a third party before the
Chamber under rule 44 § 3 of the Rules of the Court, and extended for proceedings before
the Grand Chamber through fresh observations. We update our previous submission to
reaffirm how World Athletics’ Eligibility Regulations for the Female Classification
across versions in 2018, 2019 and 2021 created dynamics threatening the patient-
physician relationship and violating medical ethics, and address how they are exacerbated
by the new version (in effect as of March 2023).
2. The World Medical Association (WMA) is a global federation of National Medical
Associations representing millions of physicians worldwide. It aims to ensure the
independence of physicians and the highest possible standards of ethical behavior and
care by physicians toward all people. The WMA provides ethical guidance covering a
wide range of subjects, including health-related human rights, in order to promote and
defend the basic rights of patients and physicians. The Global Health Justice Partnership
(GHJP), an initiative of Yale University’s Law School and School of Public Health, was
established to promote interdisciplinary, innovative, and effective responses to key risks
to health-related rights globally. The GHJP works in partnership with relevant scholars
and practitioners around the world to move research and analysis into action to promote
the rights and health of all persons. The GHJP has developed an extensive program of
research and policy analysis on gender, health, and rights.
3. The WMA has unequivocally objected to the Eligibility Regulations for the Female
Classification (Athletes with Differences of Sex Development) (“Regulations”) approved
by World Athletics (previously the IAAF) and has called on physicians to refrain from
participating in their implementation. These submissions are in furtherance of the
WMA’s consistent position on the Regulations and seek to demonstrate that: (i) the
Regulations cannot be implemented without the active participation of physicians; (ii) the
Regulations engender the violation of fundamental ethical principles and obligations
generally accepted in the medical community and enshrined in various Declarations of
the WMA; and (iii) these principles and obligations relate to the rights guaranteed under
the European Convention on Human Rights and can aid the Court in their interpretation.
THE ROLE OF PHYSICIANS IN THE IMPLEMENTATION OF THE REGULATIONS
4. The Regulations exclude participation in athletics events in the women’s classification
based on eligibility criteria that must be identified by physicians, including blood
testosterone level, androgen sensitivity, and the presence of any listed “differences of sex
development” (DSDs).1
The Regulations require certain athletes to reduce and maintain
their blood testosterone below a certain level through pharmacological or surgical
interventions that must be prescribed and administered or performed by physicians.
5. At all stages of implementation, the Regulations implicate and rely on physicians,
including athletes’ personal physicians, physicians affiliated with or appointed by World
1
The DSDs covered by the Regulations since 2019 are: 5α-reductase type 2 deficiency; partial androgen
insensitivity syndrome; 17β-hydroxysteroid dehydrogenase type 3 deficiency; ovotesticular DSD; or any other
genetic disorder involving disordered gonadal steroidogenesis. Compare Eligibility Regulations for the Female
Classification (Athletes with Differences of Sex Development) 2018, r 2.2(a)(i); 2019, r 2.2(a)(i); 2021, r 2.2.1(a);
2023, r 3.1.1. For event exclusions, compare Regulations 2018, r 2.2(b); 2019, r 2.2(b); 2021, r 2.2.2; 2023, r 2.1.
2
Athletics or national athletics federations, and other specialists. A combination of these
medical professionals may be involved in each of the three distinct stages of assessment
under the Regulations: identification, testing, and intervention.
6. Athletes are identified for investigation by the World Athletics Medical Manager,
usually a physician, based on information received from sources including the athlete and
the team doctors of the athlete’s affiliated national federation. Information may include
the results of routine pre-participation health examinations and from the analysis of blood
or urine samples collected for anti-doping purposes.2
7. Identification is followed by a multi-step testing process carried out by a range of
physicians. It involves: (1) initial clinical examination, data compilation, and preliminary
endocrine assessment by qualified physicians; (2) assessment by an expert panel of
medical professionals convened by World Athletics; and (3) possible further assessment
at a designated specialist reference center. The physicians involved may include the
athlete’s own physician, gynecologists, endocrinologists and pediatricians, among others.
8. If the expert panel determines that an athlete does not meet the eligibility criteria, the
athlete must submit, in order to compete and continue their career, to ongoing monitoring
of testosterone suppression which, as the 2023 Regulations more explicitly name, has
always entailed notice requirements, surveillance, and inferred ‘consent’ to sample
analysis for compliance.3
This involves interventions to reduce and maintain the
athlete’s natural blood testosterone level below the specified level for an extended period
to establish eligibility, and at all times to maintain eligibility, through pharmacological
or surgical interventions. While the Regulations state that “surgical anatomical changes
are not required in any circumstances,” this suggestion rests on the assumption that other
interventions will be able to maintain the required levels.4
9. In sum, the Regulations depend on, and have continued to call on despite objections, the
active participation of physicians – across specialties – at every stage of implementation.
It is therefore of critical concern that such implementation is in flagrant breach of the
most fundamental ethical principles and obligations of the medical profession.
VIOLATION OF THE PRINCIPLES OF MEDICAL ETHICS
10. Crucially, throughout the process stipulated by the Regulations, athletes do not
voluntarily come to physicians as individuals seeking medical care, but are compelled to
do so for the sole purpose of athletics’ eligibility rules compliance.5
Therefore, the
patient-physician relationship is tainted from the outset by external coercion creating an
indefensible situation in which physicians are faced with “patients” who have neither
freely sought nor require care. Nonetheless, physicians have ethical obligations to the
athlete-patients now before them, ethics that the Regulations ask them to violate.
11. The WMA recognizes the following medical ethics principles as core values of the
medical profession: respect for autonomy, beneficence, non-maleficence, and justice, as
2
Regulations 2018, r 3.2, 3.3; 2019, r 3.2, 3.3; 2021, r 3.2, 3.3; 2023, r 4.5, 4.6.
3
Regulations 2018, r 3.9, 3.12, 3.18, Appendix 3 point 8(c); 2019, r 3.9, 3.12, 3.19, Appendix 3 point 8(c); 2021,
r 2021, r 3.9, 3.12, 3.19, Appendix 2 point 8(c). Compare 2023, r 2.1.2, 4.10, 5.2, 5.3, Appendix 2 point 8(c).
4
Regulations 2018, r 2.4; 2019, r 2.4; 2021, r 2.4; 2023, r 3.3.2. The Court of Arbitration for Sport noted that
expert witnesses called by the parties were unable to agree on whether oral contraceptives stably reduced
testosterone levels, the limited evidence and lack of guidelines for such treatment on elite athletes, and that if oral
contraceptives could not maintain a lowered level of testosterone, an athlete would be required to turn to GnRH
agonists or gonadectomy: Semenya and ASA v. IAAF, CAS 2018/O/5794 [487], [592], [593].
5
Regulations 2018, r 3.5; 2019, r 3.5; 2021, r 3.5; 2023, r 4.6.
3
well as confidentiality, non-discrimination, consciousness, and the defense of human
rights.6
These principles underpin the codes of many regional medical associations,
including the American Medical Association, the Africa Medical Association, and the
Conseil Européen des Ordres des Médecins. Further, the WMA’s Declaration of Geneva
– the modern Hippocratic oath – dictates that physicians will not, in any circumstances,
use their medical knowledge to violate human rights and civil liberties.7
Any medical
assessment or intervention that does not privilege the patient’s health and well-being, or
that is conducted without the patient’s free and informed consent, is in opposition to the
fundamental medical ethics principles reflected in the WMA’s statements.
a. Respect for autonomy
12. The WMA has made strong commitments to the ethical principles promoting both patient
and professional autonomy. First, the WMA’s Declaration of Seoul on Professional
Autonomy and Clinical Independence stipulates that physicians must have the freedom
to exercise their professional judgment in the care and treatment of their patients without
undue or inappropriate influence by outside parties.8
The Regulations, however, ask
physicians not only to identify, examine, and diagnose at the behest of an entity other
than the patient (as may arise in workers’ compensation systems or employment fitness
protocols, e.g., and which may also raise ethical concerns),9
but also to intervene upon
athletes using non-beneficial practices aimed at compliance with sports regulations,
rather than making therapeutic and clinically appropriate recommendations. Efforts to
bring athletes into compliance with the Regulations reveal external influences on
professional autonomy, jeopardizing the patient-physician relationship.
13. The WMA’s Declaration of Geneva requires physicians to respect the autonomy and
dignity of their patients, focusing on confidentiality and consent.10
These principles have
been translated into discrete rights in the WMA Declaration of Lisbon on the Rights of
Patients: (i) the right to choose freely one’s physician and health service institution; (ii)
the right to self-determination, to make free decisions regarding oneself, and to give and
withhold consent to any diagnostic or therapeutic procedure; and (iii) the right to
confidentiality of one’s health status, medical condition, diagnosis, prognosis, treatment,
and all other information, even after death, except with explicit patient consent or as
provided by law. Procedures without patient consent may occur only exceptionally, as
specifically permitted by a valid law and in line with medical ethics. Yet, the Regulations
ask physicians to ignore their obligations to patients, engendering practices that deny the
ability of athlete-patients to make informed decisions and exercise moral choice.
6
Declaration of Geneva [1948] . International
Code of Medical Ethics [1949] . Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects [1964]
. Declaration of Lisbon on the Rights of the Patient [1981]
. Declaration of
Cordoba on Patient-Physician Relationship [2020] .
7
Declaration of Geneva, n 6.
8
Declaration of Seoul on Professional Autonomy and Clinical Independence [2018]
.
9
International Dual-Loyalty Working Group, Dual Loyalty & Human Rights in Health Professional Practice:
Proposed Guidelines & Institutional Mechanisms [2003] 48 .
10
Declaration of Geneva, n 6.
4
14. For example, while the Regulations state that “no athlete will be forced” to submit to
medical assessment or interventions, the consequence of such refusal is exclusion:
originally from an arbitrary list of events included under Regulations from 2018 to 2023,
and now from all events.11
Facing a set of forced choices does not allow athletes to make
a truly voluntary decision about whether to undergo assessment or intervention. From the
perspective of medical ethics, the conditions required for the informed consent of the
patient are not met, especially in light of elements of coercion. Particularly coercive
conditions arise where athletes, their families, national federations and the team of agents,
promoters, and sponsors supporting them, depend on their sporting career for their
livelihood and economic stability. This has been shown to be the case insofar as the
Regulations disproportionately affect athletes from under-resourced nations.12
This
concern is more pronounced under the 2023 Regulations: while athletes previously could
(and in some instances did) switch to unlisted events, they are now excluded from all
events, increasing the degree of coercion to submit to the assessments and intervention.
15. In prescribing and carrying out the medical interventions required to meet the eligibility
criteria in the Regulations, physicians are faced with a stark dilemma: either they act
against the core values of their profession or oppose the Regulations’ imperatives and
risk losing their work. This is also true of physicians employed by national federations
who are in turn bound by World Athletics’ rules and regulations (i.e., a “multiple
principal problem,” also sometimes framed as “dual loyalty” in medical contexts).13
16. The Regulations therefore put physicians at risk of violating key medical ethics principles
derived from autonomy. For example, ethical principles protecting informed consent
require that a patient or their authorized representatives be provided with complete
information about their medical condition, treatment options available, associated
benefits and risks in the immediate and long-term, and anticipated costs, in language they
understand.14
Yet, in facilitating compliance with the Regulations, physicians are
required to focus on specific non-health-related goals such as lowering testosterone to a
certain level, rather than presenting all options, including no interventions at all. Such a
narrow lens creates risks that athletes will not receive or fully consider all information on
the tests and procedures to be conducted, or the implications of test results.15
17. Further, the Regulations put physicians at risk of conduct that violates confidentiality
obligations toward their patients. This risk may arise either directly (through providing
medical information such as test results to athletics authorities, including World
Athletics, or national federations);16
or indirectly, (by implicating physicians in chains of
information sharing in which athletics authorities, who have shown themselves not to be
reliable in terms of confidentiality, act in ways that result in an athlete being disqualified
or changing events, making it obvious that an athlete is suspected of having a DSD).17
11
Regulations 2018, r 2.5, 2.6; 2019, r 2.5, 2.6; 2021, r 2.5, 2.6; 2023, r 3.3, 3.4. The 2023 version states simply
that consent may be revoked, demonstrating continued lack of appreciation for how ‘choice’ is fundamentally
constrained, given that revocation of consent removes eligibility: Regulations 2023, r 2.2.
12
See Human Rights Watch, ‘They’re Chasing Us Away From Sport – Human Rights Violations in Sex Testing
of Elite Women Athletes’ [2020] 58, 93-97 .
13
ibid 54-56.
14
Basil Varkey, ‘Principles of Clinical Ethics and Their Application to Practice’ [2020] Vol. 30(1) Med Princ
Pract 17, 29.
15
Human Rights Watch, n 12 at 63-67.
16
Human Rights Watch, n 12 at 59, 61-63.
17
Human Rights Watch, n 12 at 46, 59, 65.
5
18. The coercive nature of the entire process is reinforced by the involvement of physicians
associated with national federations. While the Regulations formally govern only World
Athletics’ approach and action regarding eligibility testing, they call for national
federations’ cooperation in their application and enforcement.18
This adds a layer of
opacity and a cascade of abusive interventions, as the Regulations’ trickle-down effects
are seen in efforts by national federations, through team doctors and affiliated physicians,
who proactively monitor and test athletes for signs of differences in sex development.
The Regulations specifically identify team doctors of national federations as “reliable
sources” of information.19
Athletes subjected to monitoring, invasive check-ups and
testing have recounted instances where varied interventions and tests were conducted in
quick succession and they were not provided sufficient information or detail on the
process or results. Athletes have also spoken of being pressured by physicians affiliated
with national federations to undergo invasive physical examinations of chest and genitals
leading to medically unnecessary interventions so they could continue to compete.20
b. Beneficence and Non-maleficence
19. The principle of beneficence obliges physicians to act in a way that benefits the patient,
including to promote their overall welfare by balancing the benefits of any intervention
against risks and costs. Relatedly, the principle of non-maleficence obliges physicians to
avoid causing harm to the patient, including unnecessary pain, suffering, or offense.21
20. The principles of beneficence and non-maleficence are at the heart of the patient-
physician relationship. The WMA’s Declaration of Cordoba on Patient-Physician
Relationship highlights that the privileged bond between patient and physician is “the
fundamental core of medical practice” and is based on trust arising from the physician’s
commitment to alleviate suffering and improve a person’s health and well-being.
21. The Regulations ask physicians to prescribe and administer or perform medical
interventions for the purpose of compliance at all times with sports eligibility rules,
regardless of whether this is in the best interests of the patient and will benefit their health
and well-being. Physicians are called on by the Regulations to prescribe or perform a
treatment that will quickly reduce and consistently maintain blood testosterone level
below the specified threshold, a challenge given testosterone’s dynamic fluctuations.
With eligibility to participate in all events now at risk, there is even more pressure to
intervene, yet there is no guidance. No agreed approach has been developed precisely
because the objective of the Regulations is not one that any patient would freely request
or any doctor would otherwise recommend. A medical intervention is, in general, only
appropriate where there is a medical need, and with attention to minimal invasiveness
and side effects; medically unnecessary interventions are generally not in the best
interests of patients and can lead to long-term and even unanticipated health
consequences.22
All procedures to reduce blood testosterone for the purpose of
compliance with the Regulations, as opposed to health-related reasons, are inherently
medically unnecessary, a fact that physicians connected with World Athletics have
18
Regulations 2018, r 1.3; 2019, r 1.3; 2021, r 1.3; 2023, r 2.4.
19
Regulations 2018, r 3.3; 2019, r 3.3; 2021, r 3.3; 2023, r 4.5
20
Human Rights Watch, n 12 at 59, 63-67.
21
Principles of Biomedical Ethics, n 6.
22
Medical interventions do not always take place only in case of a medical need, e.g., where testing is ordered by
a judicial body or for purely aesthetic reasons. However, in such cases, interventions are either required by valid
law or occur with free and informed patient consent, unlike the interventions required under the Regulations,
which are (a) not binding law enacted by a State and (b) under which athletes must either agree to reduce their
blood testosterone levels in order to continue participating in events covered by the Regulations or risk exclusion.
6
acknowledged.23
They cannot, therefore, be said to be in the individual’s benefit or in
accordance with the beneficence principle.
22. Moreover, the side effects of all such procedures constitute risks that cannot be balanced
against any health benefit because, again, their purpose is compliance with sports
eligibility rules. These include diuretic effects that cause excessive thirst and urination,
electrolyte imbalance, liver toxicity, disruption of metabolism, inhibited steroid
production, cortisol deficiency, headache, fatigue and nausea (for pharmacological
interventions such as hormonal contraceptives or GnRH contraceptives),24
as well as
compromised bone strength, chronic weakness, depression, diabetes, and sterilization (in
the case of surgical interventions such as gonadectomy).25
Causing these harms to an
individual, without a health- or well-being-related reason to justify them, offends the non-
maleficence principle. The 2023 Regulations have reduced the testosterone limit from 5
to 2.5 nmol/L, which increases the risk that physicians will be called upon to administer
GnRH agonist or surgical treatments to prevent fluctuations in testosterone levels, but
which are associated with very serious and long-lasting side effects.
23. Importantly, the principles of beneficence and non-maleficence require recognition that
what constitutes a benefit for one patient may be harmful to another.26
Thus, while some
women choose to take oral contraceptives for birth control or regularizing their menstrual
cycle, the objectives of such interventions relate to their own fertility and other health
goals and are markedly different from reducing blood testosterone levels to meet sports
eligibility standards. Likewise, while individuals with differences in sex development
may sometimes choose to undergo interventions like surgery to address specific medical
needs such as the prevention of a germ cell tumor, this is not the case with athletes
investigated under the Regulations. These athletes have not indicated any health concern;
indeed, having a blood testosterone level above 5 or 2.5 nmol/L (or any other limit) is not
in itself considered a medical condition requiring an intervention to lower it.27
24. The Regulations ask physicians to act contrary to their ethical obligations by disregarding
the range of risks associated with reducing blood testosterone level and by prescribing
and administering interventions to maintain that level over athletes’ entire careers without
any medical need or health benefit. For this reason, the WMA has called on physicians
to oppose the Regulations and refrain from implementing them on the ground that “[i]t is
in general considered unethical for physicians to prescribe treatment for excessive
endogenous testosterone if the condition is not recognized as pathological.”28
23
Sports officials affiliated with World Athletics acknowledged the lack of a medical condition requiring surgical
and pharmacological interventions on athletes in a retrospective clinical study they conducted on athletes on whom
partial clitoral removal with bilateral gonadectomy were performed. See Patrick Fenichel et al, ‘Molecular
Diagnosis of 5α-Reductase Deficiency in 4 Elite Young Female Athletes Through Hormonal Screening for
Hyperandrogenism’ [2013] Vol 98(6) Journal of Clinical Endocrinological Metabolism E1055, E1057.
24
Human Rights Watch, n 12 at 63-67, 82; Rebecca Jordan Young et al, ‘Sex, Health and Athletes’ [2014] Vol.
348 BMJ 348, 349.
25
Letter from Special Rapporteur on the right to enjoyment of the highest attainable standard of physical and
mental health et al to IAAF (18 September 2018)
.
26
Raanan Gillon, ‘Medical ethics: four principles plus attention to scope’ [1994] BMJ 184, 185.
27
See American Association of Clinical Endocrinologists, ‘Medical Guidelines for Clinical Practice for the
Diagnosis and Treatment of Hyperandrogenic Disorders’ [2001] Vol. 7(2) Endocrine Practice 120; Rebecca
Jordan Young et al, n 24 at 349.
28
‘WMA urges physicians not to implement IAAF Rules on classifying women athletes’ (WMA, 25 April 2019)
.
7
25. Furthermore, the Regulations ask physicians to violate patients’ rights – codified in the
WMA Declaration of Lisbon – to be cared for by a physician who is free to make clinical
and ethical judgments and to always be treated in accordance with their best interests and
generally approved medical principles. The WMA has constantly and firmly opposed
intrusion in the practice of medicine: the patient-physician relationship “should never be
subject to undue administrative, economic, or political interferences” or other influences
that risk alienating physicians from patients and potentially harming them.29
The ongoing,
compelled, non-therapeutic, and potentially harmful actions taken under the Regulations
undermine the essential “atmosphere of trust” in the patient-physician relationship. The
WMA has therefore consistently opposed the Regulations and asked physicians to “refuse
to perform any test or administer any treatment or medicine not in accordance with
medical ethics, and which might be harmful to the athlete using it, especially artificially
modifying constituents, biochemistry or endogenous testosterone.”30
Upholding patient
rights and the principles of beneficence and non-maleficence are fundamental obligations
of physicians and are seriously interfered with by the Regulations.
c. Justice and Non-discrimination
26. Justice as a principle of medical ethics is concerned with the “fair, equitable, and
appropriate” treatment of persons, including distributively just and non-discriminatory
treatment.31
Discrimination involves a failure to provide healthcare, as required by
principles of medical ethics, based on a person’s individual or social characteristics such
as sex, gender, race, religion, age, type of illness or economic status.32
In the WMA’s
Declaration of Geneva, the physician’s pledge recognizes this principle of justice by
requiring physicians not to permit considerations such as age, disease, disability, ethnic
origin, nationality, gender, sexual orientation or social standing to come in the way of
their duty to their patients.33
This duty of physicians relates to the right of patients to
appropriate medical care without discrimination.34
27. To understand how the Regulations implicate physicians in discriminatory practices, it is
useful to consider the characteristics in turn. First, the Regulations only apply to women
and involve the surveillance of all women, especially those whose gender presentation
does not match dominant stereotypes of femininity. As noted by United Nations human
rights experts, the Regulations’ surveillance of all women, and the selection of a subset
of women to investigate, reinforces negative stereotypes and stigma around race, sex, and
gender identity and subjective expectations around which bodies are appropriate.35
28. Second, the Regulations are only concerned with the eligibility of women with a specific
set of intersex variations or differences in sex development known as 46,XY DSD,
characterized by the Regulations previously as blood testosterone level above 5 nmol/L
and now 2.5 nmol/L, and “sufficient androgen insensitivity for those levels of testosterone
to have a material androgenizing effect.”36
In practice, assessment is made through
reference to the supposed material androgenizing effects on physiological traits like
breast development, body hair, and clitoral size, determined through invasive and
29
Declaration of Cordoba on Patient-Physician Relationship, n 6.
30
WMA urges physicians not to implement IAAF Rules on classifying women athletes, n 28.
31
Basil Varkey, n 14.
32
Mohammadjavad Hosseinabadi-Farahani et al, ‘Justice and unintentional discrimination in healthcare: A
qualitative content analysis’ [2021] Vol. 10 J Educ Health Promot 51, 51-52.
33
Declaration of Geneva, n 6.
34
Declaration of Lisbon, n 6.
35
Letter from Special Rapporteur on the right to health, n 25.
36
Regulations 2018, r 2.2(a); 2019, r 2.2(a); 2021, r 2.2.1(a); 2023, r 3.1.
8
offensive exams carried out by physicians.37
Moreover, there is evidence that athletes
already under suspicion are vulnerable to being surveilled and observed for differences
in their genitalia, while submitting samples for anti-doping purposes.38
29. Identification and assessment efforts, including invasive questioning, track stereotypes
around race, gender, sexuality, and conventional notions of femininity.39
Evidence
suggests that athletes from the Global South are scrutinized and intervened upon
disproportionately – with the assistance of medical professionals – despite identifying as
women for social and legal purposes since birth.40
The WMA has said the Regulations
“constitute a flagrant discrimination based on the genetic variation of female athletes.”41
30. The Regulations’ discriminatory remit is made even more notable by the scope of events
covered and the divergent regimes created for physicians according to the sources of
testosterone. First, from 2018 to 2023, the Regulations applied only to women competing
in an arbitrarily chosen set of events, whereas the 2023 version goes further to cover the
sport of athletics entirely,42
despite contestation around the relationship between elevated
testosterone level and athletic performance.43
Second, the Regulations do not focus solely
on elevated testosterone levels but on the source of the testosterone (through reference to
the gonadal sex) and its “masculinizing” effects (via attention directed to secondary
sexual characteristics).44
The Regulations do not apply, for example, to women with
polycystic ovary syndrome (PCOS) or congenital adrenal hyperplasia (CAH), even where
these conditions cause natural testosterone levels above the specified level; they apply
only to women with 46,XY DSD. In fact, for women with PCOS and CAH, the
Regulations suggest interventions to address the risk of cardiovascular events and
gynecological cancers rather than reducing blood testosterone.45
In other words,
physicians are asked to provide different advice and interventions to women if they are
athletes, and based on the sources of their testosterone, rather than health-related reasons.
31. Thus, the Regulations put physicians at risk of participating in a cascade of justice
violations: identifying and intervening in women athletes’ bodies and lives under
arbitrary and discriminatory gender regimes; treating two categories of women with
37
Fabian Rose, ‘Caster Semenya and the Intersex Hypothesis’ in Sandy Montanola and Aurélie Olivesi (eds),
Gender Testing in Sport (Routledge 2017). The 2011 version of the Regulations named traits like “deep voice,”
breast shrinkage, excessive body hair, clinical data on loss of menstruation over a period of time, increased muscle
mass (all traits relatively common among elite athletes and difficult to measure) and might also encompass lack
of a uterus and larger than typical clitoris. This amalgam of possible considerations contains many features today
condemned as unacceptably culturally dependent, especially given greater global recognition of racial and ethnic
variation within and across genders. These criteria however, are retained in clinical assessment guidelines used to
assess material androgenizing effects pursuant to the Regulation. See Katrina Karkazis et al, ‘Out of Bounds? A
Critique of the New Policies on Hyperandrogenism in Elite Female Athletes’ [2012] Vol. 12(7) Am J Bioeth, 3.
38
Human Rights Watch, n 12 at 83-84; Rebecca Jordan Young et al, n 30 at 349.
39
Human Rights Watch, n 12 at 89-91. See Katrina Karkazis and Rebecca M. Jordan Young, ‘The Powers of
Testosterone: Obscuring Race and Regional Bias in the Regulation of Women Athletes [2018] Vol. 30(2) Feminist
Formations 1.
40
Letter from Special Rapporteur on the right to health, n 25. Human Rights Watch, n 12 at 27. OHCHR,
‘Intersection of race and gender discrimination in sport’ [2020] 8 .
41
WMA urges physicians not to implement IAAF Rules on classifying women athletes, n 28.
42
Regulations 2018, r 2.2(b), 2.3; 2019, r 2.2(b), 2.3; 2021, r 2.2.2, 2.3; 2023, r 3.2.
43
Sigmund Loland, ‘Caster Semenya, athlete classification, and fair equality of opportunity in sport’ [2020] J
Med Ethics 1, 4; The Powers of Testosterone, n 39 at 25, 27.
44
See Regulations 2018, r 2.2 (endnote 4), Appendix 3 point 16; 2019, r 2.2 (endnote 4), Appendix 3 point 16;
2021, r 2.2.1 (endnote 4), Appendix 3 point 16; 2023, Appendix 2 point 16; Silvia Camporesi and Paolo Maugeri,
‘Caster Semenya: sport, categories and the creative role of ethics’ [2010] J Medical Ethics 378, 379.
45
Regulations 2018, Appendix 3 point 12 (endnote 13); 2019, Appendix 3 point 12 (endnote 13); 2021, Appendix
2, point 12 (endnote 8); 2023, Appendix 2, point 12 (endnote 6). PCOS is exempted since 2018, CAH since 2019.
9
elevated blood testosterone differently, not according to health needs but for policy
compliance; and acting under dubious scientific authority in ways identified as serving a
gendered and racially discriminatory goal of bringing women’s naturally occurring
testosterone levels, and their primary and secondary sexual characteristics, within the
bounds of what sports regulators consider acceptable for a woman.46
PRINCIPLES OF MEDICAL ETHICS AND HUMAN RIGHTS
32. The right to the highest attainable standard of physical and mental health is enshrined in
the International Covenant on Economic, Social and Cultural Rights. It is an inclusive
right, extending beyond healthcare to the underlying determinants of health, and States
must abstain from enforcing discriminatory practices relating to women’s health status
and needs.47
The principles of medical ethics described in these submissions support the
promotion and protection of human rights in medical practice, and the WMA “is
committed to promoting health-related human rights for all people worldwide.”48
The
WMA has recognized that “[a] woman’s right to the enjoyment of the highest standard
of health must be guaranteed throughout her lifetime, equal to that of men” and “[w]omen
are affected by many of the same health conditions as men, but women experience them
differently due to both genetics and the social construction of gender.”49
33. These principles of medical ethics correspond to ECHR rights under article 3 (right
against inhuman and degrading treatment), article 8 (right to private and family life) and
article 14 (right to equality and non-discrimination) and can aid this Court in interpreting
these provisions in the health context.
34. This Court has previously located health rights under article 850
and recognized that States
have a positive obligation under articles 2 (right to life) and 8 to institute measures to
protect the physical integrity of patients “…based on the need to protect patients as far as
possible from possibly serious consequences of medical interventions.”51
35. Notably, this Court has demonstrated concern about forcible medical interventions
undertaken without patient consent or any therapeutic need. In VC v Slovakia, the Court
highlighted that sterilization of a Romani woman, conducted under stereotyped and
paternalistic conditions, demonstrated an absence of full, free, and informed consent, or
any therapeutic objective, generating serious consequences for her physical and mental
health, and violating rights under articles 3 and 8.52
These forcible interventions affecting
the reproductive health status of women were found incompatible with foundational
rights principles of respect for freedom and dignity, especially when alternative methods
were available and the intervention did not address any imminent life-threatening
condition.53
The case engaged with concerns similar to the constrained ‘choice’ of
athletes coerced into undergoing medical interventions lacking any therapeutic objective.
36. Further, coercive medical interventions under the Regulations, directed at a specific set
46
Letter from Special Rapporteur on the right to health, n 25.
47
CESCR, ‘General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12)’ (11
August 2000, E/C.12/2000/4).
48
WMA, Human Rights – Physicians as Human Rights Advocates accessed Dec. 19, 2023.
49
WMA, Women and Health – A Woman’s Right to the Highest Standard of Health accessed Dec. 19, 2023.
50
Nada v Switzerland App no 10593/08 (ECHR, 12 September 2012) [151].
51
Erdinc Kurt v Turkey App no. 50772/11 (ECHR, 6 June 2017) [53].
52
VC v Slovakia App no 18968/07 (ECHR, 8 November 2011) [118].
53
ibid [113].
10
of women athletes based on subjective standards for physical features and characteristics,
entail a violation of the right against discrimination based on sex under article 14. The
Regulations lack reasonable and objective justifications, particularly given the contested
scientific basis of claims of athletic advantage caused by elevated testosterone levels.
37. Moreover, recognizing the overwhelming risks to rights provoked by interventions on
persons with DSD, the Parliamentary Assembly of the Council of Europe, and other rights
groups,54
have cautioned against surgical or pharmacological interventions on children
with intersex variations and DSD precisely because they are conducted without informed
consent, violate physical integrity, respond to no immediate danger to health and hold no
genuine therapeutic purpose nor evidence of long-term effectiveness or benefit.55
These
considerations apply equally to athletes investigated under the Regulations.
CONCLUSION AND IMPLICATIONS
38. The conditions for eligibility imposed by the Regulations threaten the patient-physician
relationship as they ask physicians to violate their ethical obligations to athletes who
come before them not for health-seeking but rather regulatory compliance reasons. It
unfairly leaves athletes with the coerced ‘choice’ to either submit to physical assessments,
consult with physicians, and undergo unnecessary medical interventions with the
potential for serious side effects, or give up their livelihood.
39. Physicians are central to the Regulations: their implementation would be impossible
without physicians’ involvement. Physicians’ conflicts of interest, arising in practice
from their dual loyalties to the athletes and athletics federations under the Regulations,
constrain them to offer unsuitable and harmful medical advice to athletes, as opposed to
appropriate medical care that puts the patient’s health first.56
Rather than offering holistic
health care that is tailored and responsive to athletes’ specific concerns, the Regulations
disregard these conflicts of interest and ask physicians to take steps which risk their
ethical obligations. All other options that better respond to athletes’ needs are foreclosed.
40. The WMA’s Declaration on the Principles of Health Care for Sports Medicine, first
adopted in 1981, provides that “in order to carry out his or her ethical obligations, the
sports medicine physician’s authority must be fully recognized and upheld, particularly
when it concerns the health and safety of the athlete. Concern for the athlete’s health and
safety must override the interests of any third party.”57
Referring to the World Athletics’
rules, the Declaration also specifies that “the mere existence of a condition caused by a
difference in sex development, in a person who has not expressed a desire to change that
condition, does not constitute a medical indication for treatment. Medical treatment solely
to alter athletic performance is unethical”.
41. We hope this brief assists the Court in appreciating how the Regulations place physicians
in an unacceptable position, generating not just ethical violations but violations of the
rights of persons facing medical choices that ethical standards were created to protect.
54
‘Unnecessary Surgery on Intersex Children Must Stop’ (Physicians for Human Rights, 20 October 2017)
; Human Rights Watch, ‘I Want to
Be Like Nature Made Me – Medically Unnecessary Surgeries on Intersex Children in the US’ [2017]
.
55
Promoting the human rights of and eliminating discrimination against intersex people [2017] RES 2191.
56
Nancy M. P. King and Richard Robeson, ‘Athletes are Guinea Pigs’ [2013] Vol. 13(10) Am J Bioeth 13.
57
Declaration on Principles of Health Care for Sports Medicine [2021] .