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Intersex, Discrimination and the Healthcare Environment – a Critical Investigation of Current English Law

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Intersex, Discrimination and the Healthcare Environment – a Critical Investigation of Current English Law Intersex, Discrimination and the Healthcare Environment – a Critical Investigation of Current English Law Karen Jane Brown Submitted in Partial Fulfilment of the Requirements of London Metropolitan University for the Award of PhD Year of final Submission: 2016 Table of Contents Table of Contents......................................................................................................................i Table of Figures........................................................................................................................v Table of Abbreviations.............................................................................................................v Tables of Cases........................................................................................................................vi Domestic cases...vi Cases from the European Court of Human Rights...vii International Jurisprudence...vii Tables of Legislation.............................................................................................................viii Table of Statutes- England…viii Table of Statutory Instruments- England…x Table of Legislation-Scotland…x Table of European and International Measures...x Conventions...x Directives...x Table of Legislation-Australia...xi Table of Legislation-Germany...x Table of Legislation-Malta...x Table of Legislation-New Zealand...xi Table of Legislation-Republic of Ireland...x Table of Legislation-South Africa...xi Objectives of Thesis................................................................................................................xii Acknowledgments.................................................................................................................xiii Declaration.............................................................................................................................xiii Abstract................................................................................................................................. xiv Part 1 of Thesis.......................................................................................................................xv Chapter One: Primum non nocere ‘First do no Harm’...1 1.1 Introduction ...1 1.2 What is Intersex? ... 6 1.2.1 The Evolution of a Name- Hermaphrodite ...6 1.2.2 A Modern Approach – ‘Intersex’ and ‘DSD’ ...12 1.2.3 The Rise of the Activists, the Demise of a name. ... 13 1.3 Potential Discrimination - Current English Law...19 1.3.1 Discrimination in Practice ...21 1.3.2 Sport ...23 1.4 Hippocrates, a Code of Ethics... 27 1.5 Medical Ethics ...29 1.5.1 Virtue Ethics... 30 1.5.2 Deontology ...31 1.5.3 Consequentialism...33 1.6 Medical Ethics in the 20th Century... 33 1.6.1 John Money...38 1.7 The Four Principles...40 i Table of Contents 1.7.1 Autonomy ...41 1.7.2 Non-maleficence ...42 1.7.3 Beneficence ...43 1.7.4 Justice ...44 1.8 Health Care Law and the Intersexed ... 45 1.9 Following Chapters ...47 Chapter Two: Literature Review and Methodology ...49 2.1 Literature Review ...49 2.1.1 Scientific Authorities ...51 2.1.2 Gender Studies and Sociological Texts... 52 2.1.3 Medical Ethics ...53 2.1.4 Legal Writing...54 2.1.5 Consent to Treatment ...57 2.1.6 Intersex Organisations ...62 2.1.7 Summary ...62 2.2 Methodology ...63 2.2.1 Doctrinal Research Analysis... 63 2.2.2 Comparative Law Methodology... 64 2.2.3 Empirical Research ...67 2.2.3.1 Phenomenology ...67 2.2.3.2 Quantitative Data... 71 2.2.4 Summary ...72 Chapter Three: Medical Science and Intersex Conditions... 74 3.1 Introduction ...74 3.1.1 Scientific Background ...75 3.2 Alterations to the Karyotype: Sex Chromosome Anomalies- DSD Associated Conditions ...76 3.2.1 Klinefelter’s Syndrome (KS) ... 79 3.2.2 Turner Syndrome (TS) ... 82 3.3 Alterations to the Karyotype: Sex Chromosome DSD ...83 3.3.1 Mixed Gonadal Dysgenesis (MGD) ...85 3.4 Genetic Modifications: Congenital Development of Ambiguous Genitalia (46 XX DSD). ...87 3.4.1 Congenital Adrenal Hyperplasia (CAH) ... 89 3.4.1.1 Grades of Severity ...92 3.4.1.2 CAH due to 21-Hydroxylase deficiency...94 3.4.1.3 CAH due to 11β-Hydroxylase deficiency and 3β-dehydrogenase... 96 3.5 Genetic Modifications: Congenital Disjunction of Internal and External Sex Anatomy (46, XY DSD) ...98 3.5.1 XY Gonadal (testicular) Dysgenesis ...98 3.5.2 Androgen Insensitivity Syndrome (AIS) ...99 3.5.2.1 Complete Androgen Insensitivity Syndrome (CAIS) ...100 3.5.2.2. Partial Androgen Insensitivity Syndrome (PAIS) ...102 3.5.3 5-alpha-reductase deficiency (5-ard) ... 102 3.5.3.1 5ard- its developmental effect ...104 3.5.3.2 17-beta hydroxysteroid dehydrogenase 3 deficiency (17bHSD3) ...106 3.6. Incomplete Development of Sex Anatomy ...106 3.6.1 Hypospadias... 107 3.6.2 Cloacal Exstrophy ...110 3.7 Summary...111 Chapter Four: Society, the Intersexed and the Law, a Historical Prospective 4.1113 4.1 Introduction...113 4.2 The Views of Society...115 4.3 The Views of Scientists... 124 4.3.1 The legacy of John Money ...128 4.4 Gender Studies and the Intersexed...134 4.4.1 Sexuality ...136 ii Table of Contents 4.4.2 Sex and Gender... 137 4.4.3 The Rise of Gender Studies and the Fall of Money...138 4.5 Gender Allocation and Legal Support- Concluding Thoughts...148 Chapter Five: ‘Informed’ Consent and the Intersexed: Myths and Realities... 153 5.1 Introduction...153 5.2 The Nature of Consent ...154 5.2.1 ‘Informed Consent’? ...156 5.2.2 Consent and English Law...157 5.2.2.1 Disclosure...162 5.3 The Legal Meaning of ‘Capacity’...165 5.4 Children and Consent...170 5.4.1 Mature Minors and Medical Treatment ...173 5.5 Treatment of the Intersexed-International Jurisprudence ...179 5.5.1 The Columbian Decisions ...179 5.5.2 Other Cases...183 5.6 Legislative Measures, a Comparison with other Jurisdictions...185 5.6.1 Young Children ...188 5.6.2 Mature Minors...190 5.7 Conclusion...194 Part Two of Thesis ...196 Chapter Six: Discrimination Before Birth; Assisted Reductive Techniques, Pre-implantation Genetic Diagnosis and Abortion... 197 6.1 Introduction...197 6.2 Assisted Reductive Techniques (ART) ...198 6.2.1 Fluorescence in situ hybridization (FISH) ...199 6.2.2 Intrauterine insemination (IUI) ...199 6.2.3 In Vitro Fertilization (IVF) ...200 6.2.4 Intra-cytoplasmic Sperm Injection (ICSI) ...202 6.3 Embryo Monitoring ...202 6.4 Ethical Concerns with ART...203 6.5 Pre-implantation Genetic Diagnosis (PGD)...205 6.5.1 PGD Legal Provisions and the Extent of Discrimination ...208 6.6 Antenatal Testing and Abortion ...214 6.7 Antenatal Testing ...215 6.7.1 Invasive Testing ...216 6.7.2 Non-Invasive Testing- Ultrasound scans...218 6.7.3 Non-Invasive Prenatal Diagnosis using Cell-free Fetal DNA (cffDNA) ...222 6.7.4 Ethical Concerns ...223 6.8 Testing for and Treating CAH during Pregnancy... 224 6.9 The Abortion Act 1967 ...226 6.9.1 The Abortion Act 1967- background ...227 6.10 ‘Substantial Risk’ and ‘Seriously Handicapped’... 230 6.11 Parental Choice...234 6.12 Reflections on Section 1(1)(d) 6.13 Conclusions...240 Chapter Seven: Birth, Neonatal Testing and Discrimination ...242 7.1 Introduction...242 7.2 Routine Neonatal Assessments and the Intersexed ...244 7.3 Newborn Blood Spot Screening (NBS) ...246 7.3.1 The Argument in favour of Introducing NBS for CAH...249 7.3.2 Arguments against Introducing NBS for CAH... 251 7.3.2.1 Inaccurate test results... 251 7.3.2.2 Prohibitive Cost?... 256 7.4 Consideration of NBS screening for Sex Chromosome Anomalies...259 iii Table of Contents 7.4.1 The Importance of Testing for KS at birth... 260 7.5 Conclusion...266 7.5.1 Recommendations...267 Chapter Eight: Conformity; Early Childhood and Enforced Operations Introduction ...269 8.1 Introduction...269 8.2 Consent and Emergency Neonatal Testing...269 8.3 Early Genital Assignment Surgery...272 8.3.1 Male circumcision...275 8.3.2 Sterilisation...277 8.3.3 Female Genital Mutilation (FGM) and the Intersexed ...281 8.4 The Female Genital Mutilation Act 2003 ...286 8.5 Conclusions...289 Chapter Nine: The Young Intersex Person’s Right to Know...291 9.1 Introduction...291 9.2 Access to Health Records, Current legislation...292 9.2.1 Online Access to Health Records...294 9.3 Young People’s Access to Health Records...295 9.4 Methods of Redress...299 9.5 Views on ‘open’ access and veracity... 300 9.6 Conclusion ...303 Chapter Ten: Births, Deaths, Marriages and the Intersexed; Concluding Thoughts. ...306 10.1 Introduction ...306 10.2 Registration of Birth- Male or Female?...307 10.3 The Parallel law for Transsexuals...312 10.4 Marriage...313 10.5 Deaths ...316 10.6 International Approaches to ‘Third Gender’ Recognition...317 10.6.1 Asia ...317 10.6.2 Australasia...320 10.6.3 Europe : Germany and Malta ...323 10.7 Conclusions to this Chapter ...325 10.7.1 ‘Third Gender’ on Official documentation... 326 10.7.2 ‘No Gender’ on Official documentation ...327 10.7.3 ‘Flexible Gender’ on Official documentation... 329 10.8 Conclusions to the Thesis...331 10.8.1 Final Thoughts...336 Additional Material..............................................................................................................338 Appendix A: Public Statement by the Third International Intersex Forum………………..339 Appendix B: Hippocratic Oath; Classical Version...............................................................341 Appendix C: WMA Declaration of Geneva..........................................................................342 Appendix D: The Nuremberg Code......................................................................................343 Appendix E: Questionnaires ................................................................................................345
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