The involuntary, non-therapeutic sterilization of intellectually disabled persons Anna Jennings-Edquist Medical Law, Melbourne

27 June 2014

© S

late

r &

Gor

don

Lim

ited

201

4

2!

1. Key case; 2. Scope of discussion; 3. Approaches to the conceptualisation of

disability; 4.  Legal approaches to sterilisation; 5. Competing human rights: Arguments for and

against prohibition; 6. Case studies; 7. The law today; 8.  Your views

Introduction

© S

late

r &

Gor

don

Lim

ited

201

4

3!

Secretary, Department of Health and Community Services v JWB and SMB (1992)

175 CLR 218

► “Marion’s Case” • Marion suffered from intellectual disabilities,

severe deafness, epilepsy and other disorders.

• Conditions and life worsened by menstruation.

• Parents sought order for hysterectomy and oophrectomy.

© S

late

r &

Gor

don

Lim

ited

201

4

4!

Marion’s case ► Court adopted the Gillick test of competence.

•  From Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402 (HL)

► Held parents do not have the authority to consent to serious, irreversible medical treatment on child’s behalf unless it is for a "therapeutic" purpose.

► Require court approval for non-therapeutic treatment.

© S

late

r &

Gor

don

Lim

ited

201

4

5!

Scope of discussion ► When will sterilisation without consent be

legitimate? •  When it’s therapeutic or as a measure of last resort to

secure ‘best interests’.

► The issue is statistically a gendered one.

►  ‘Involuntary’ meaning when person is unable to consent to procedure, due to age or capacity.

► What forms of sterilisation do we mean?

© S

late

r &

Gor

don

Lim

ited

201

4

6!

Approaches to disability ►  Eugenics - 20th Century. !

►  Welfarism - 1950s

►  Right based approaches - 1960s

►  The Social/Societal model ☺ •  Considered an umbrella term for range impairments,

limitations, restrictions. •  Focus on promotion of rights and engagement with

society

© S

late

r &

Gor

don

Lim

ited

201

4

7!

History of legal approaches

► 1994 Family Law Council report

► 1997 and 2001 reports by the Australian Human Rights Commission

► 2013 Involuntary or Coerced Sterilisation of People with Disabilities in Australia report by the Senate Community Affairs References Committee

© S

late

r &

Gor

don

Lim

ited

201

4

8!

Arguments for and against ►  AGAINST:

►  Denies right to freedom of choice and bodily integrity ►  Convention on the Rights of the Child ►  Convention on the Elimination of All Forms of Discrimination against

Women

►  Violates right to family, parenthood, marriage, reproduction ►  The Convention on the Rights of Persons with Disabilities ►  Convention on the Elimination of All Forms of Discrimination against

Women

© S

late

r &

Gor

don

Lim

ited

201

4

9!

►  Causes loss of dignity ►  The Convention on the Rights of Persons with Disabilities ►  Convention on the Rights of the Child

►  Form of discrimination ►  The Convention on the Rights of Persons with Disabilities ►  Convention on the Rights of the Child ►  Convention on the Elimination of All Forms of Discrimination against

Women

►  Constitutes violence or torture ►  Convention on the Rights of the Child ►  Convention against Torture and Other Cruel, Inhuman or Degrading

Treatment or Punishment ►  Special Rapporteur on torture and other cruel, inhuman or degrading

treatment or punishment

© S

late

r &

Gor

don

Lim

ited

201

4

10!

Arguments for and against ► FOR:

►  Promotes right to dignity ►  Promotes right to health ►  Promotes right to quality of life ►  Promotes right to proper medical treatment ►  Promotes right to be free from discrimination ►  Promotes support of persons without

capacity to consent ►  Practical considerations:

►  menstruation, sexuality and reproduction

© S

late

r &

Gor

don

Lim

ited

201

4

11!

Re L and M (1993) 17 Fam LR 357

► “Sarah’s case” • Doubly incontinent, epileptic, with very limited

motor functions and poor communication.

• Conditions worsened by menstruation including hormonal changes.

• Warnick J refused to authorise the sterilisation, stating that he could find no therapeutic justification.

© S

late

r &

Gor

don

Lim

ited

201

4

12!

Re Sean and Russell [2010] FamCA 948 – (26 October 2010)

► Two unrelated young boys diagnosed with Denys-Drash syndrome.

► High risk of developing potentially fatal tumours on the kidneys and testes, as well as the development of ambiguous genitalia.

► Gonadectomies proposed to reduce risk of cancer.

► Held that surgery was therapeutic, so fell within the scope of parental powers.

© S

late

r &

Gor

don

Lim

ited

201

4

13!

Re Guardianship of Kennedy (Iowa Apr. 18 2014) ► Guardian (mother) arranged vasectomy of adult

son with disability when discovered he was in sexual relationship with coworker.

► Son denies consenting to procedure. ► Court found guardian should did not require

court approval for the procedure, because not major surgery.

► Noted she "did not make such arrangement or provide assistance out of malice," and decline to terminate the guardianship.

© S

late

r &

Gor

don

Lim

ited

201

4

14!

Re Jamie [2013] Fam CAFC 110, 31 July 3013 ► On appeal from 2011 decision in the Family

Court. ► Parents of transgender minor sought to

commence treatment to suppress puberty then initiate oestrogen.

► Family Court authorised Jamie’s parent to consent to treatment on behalf of Jamie’s behalf because suppressing puberty is not a medical treatment falling within the class of cases described in Marion’s case.

© S

late

r &

Gor

don

Lim

ited

201

4

15!

Outcome of Senate Report ► Report rejected an outright ban of non-

therapeutic sterilisation procedures without consent.

► 28 recommendations made. ► Recommendations complement existing

requirement that court authorisation required for sterilisation of children and adults without capacity due to disability.

► Adopted a ‘best protection of rights’ tests.

© S

late

r &

Gor

don

Lim

ited

201

4

16!

Summary ►  Sterilisation legitimate as a measure of last resort, in order

to save persons life or to alleviate serious health burdens (therapeutic).

►  Australian law requires court authority for all non-therapeutic sterilisations when consent cannot be obtained.

►  Court’s must act in ‘best interests’ of child/adult under disability.

►  Court should consider alternative treatments, the consequence of treatment and the wishes of individual and their family.

© S

late

r &

Gor

don

Lim

ited

201

4

17!

Your thoughts and contributions