The sterilisation of people with intellectual disabilities in England and Wales during the period 1988 to 1999

• Published in: Journal of intellectual disability research Vol. 51; no. 8; pp. 569 - 579
• Main Authors: Stansfield, A. J., Holland, A. J., Clare, I. C. H.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01-08-2007; Blackwell Publishing; Blackwell; Wiley Subscription Services, Inc
• Subjects: Attorneys; best interests; Biological and medical sciences; Case Studies; Coercion; Common law; Consent; Court hearings & proceedings; Court Litigation; Court orders; Court proceedings; England; England - epidemiology; Female; Females; Foreign Countries; Gynecology; Humans; Incidence; Infertility, Female - epidemiology; Infertility, Male - epidemiology; intellectual disabilities; Intellectual Disability - epidemiology; Lawyers; Learning disabilities; Learning disabled people; Legislation; Male; Medical sciences; Mental health; Mental Retardation; Official Solicitor; Pregnancy; Psychiatry; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Referrals; Retrospective Studies; Sexuality; Social psychiatry. Ethnopsychiatry; sterilisation; Sterilization; Surgery; Wales; Wales - epidemiology; United Kingdom (Wales); United Kingdom (England); England; United Kingdom; Great Britain; Europe; Wales; United Kingdom > UK; Ability; Social environment; Handicap; Human; Legislation; Mental health; Sex; best interests; sterilisation; Developmental disorder; Jurisprudence; Sexual intercourse; consent; Mental retardation; Retrospective; common law; intellectual disabilities; Official Solicitor; Sterilization; Intellectual deficiency; Informed consent; Age; Public health
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2006.00920.x

Background  In England and Wales, if a person is thought to lack capacity to make a decision to undergo a sterilisation operation, a specific process occurs. A Judge sitting in the Family Division of the High Court receives evidence from relevant parties including psychiatric and gynaecological experts and subsequently decides on the lawfulness of the sterilisation operation. We have investigated who was referred and by whom, the reasons given, and the outcomes of the legal process during an 11‐year period.
Methods  A retrospective case note study was undertaken of all referrals to the Official Solicitor’s Office for sterilisation between 1988 and 1999. Using an established protocol, information was obtained from legal and clinical notes relating to the initial referral to the Official Solicitor, the opinions of experts, the court proceedings and the outcome.
Results  Seventy‐three people, only three (5%) of whom were men, were referred over the 11 years. They were aged between 12 and 41 years. All but one had an intellectual disability (ID). Seventy‐five per cent were living at home and did not have partners. Full applications were made for 50 of the 73 (68.5%), 39 proceeding to a court hearing. For 31 of the 39 (79.5%) cases, the court ruled that sterilisation would be in the person’s ‘best interests’. An additional six women probably had operations resulting in sterilisation without court authorization.
Conclusions  Referrals for sterilisation are almost always for people with IDs. In the case of the majority, it was thought that it was unlikely that they had had or will have in the future a sexual relationship. Care needs to be taken in interpreting the results in this case note study. We hypothesize that the request for sterilisation is the consequence of a complex process reflecting concerns about the future, but in the context of other family issues. The relationship between lacking the capacity to consent to sterilisation and the capacity to consent to sexual intercourse needs further exploration. Future studies including interviews with those involved are required.