Submission to the Attorney-General’s Department Issues Paper on Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability
(20 May 2004)
1. The Australian Law Reform Commission (ALRC) makes the following submission in response to the Attorney-General’s Department’s Issues Paper Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability.
2. In 1997, the ALRC and the Human Rights and Equal Opportunity Commission (HREOC) completed the inquiry into children and the law with the publication of ALRC 84 Seen and Heard: Priority for Children in the Legal Process. One of the issues touched on as a part of the inquiry was sterilisation applications for children with intellectual disabilities.[1] The ALRC considers that its discussion and recommendations on this issue remain relevant, and may be of assistance in furthering reform in this area.
3. This submission also makes reference to a recent inquiry by the ALRC and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council into the protection of human genetic information. The final report of that inquiry—ALRC 96 Essentially Yours: The Protection of Human Genetic Information in Australia—was tabled in the federal parliament in May 2003.
Making an application
4. The Issues Paper raises the question of who should be able to make an application to the board or tribunal in respect of a minor with a decision-making disability. Options that are flagged include one or both parents, or another person who can demonstrate that they have a ‘sufficient’ or ‘proper’ interest in the matter.
5. One of the issues considered during the ALRC and AHEC inquiry into the protection of human genetic information was DNA parentage testing. A central question was whether the consent to testing of an immature child may be given on his or her behalf by one parent or carer, or whether the consent of both parents or carers should be required.[2] While the circumstances surrounding parentage testing may be different to sterilisation decisions (particularly in regards to the relationship between the parents), some of the issues raised are of relevance to the consideration of who can make an application in respect of a minor for a sterilisation procedure.
6. There are some differences between considerations relevant to the sterilisation of an adult compared to a minor. The role and responsibility of parents must be considered together with any role or responsibility of a carer or other person who is not a parent. Section 61C(1) of the Family Law Act 1975 (Cth) provides that, subject to a court order, each of the parents of a child under 18 years has parental responsibility for the child. Decisions regarding major surgery, especially with lasting consequences, clearly fall within the realms of parental responsibility.
7. While there is some uncertainty about whether parental responsibility should be exercised jointly or independently, the Full Court of the Family Court of Australia provided some guidance in the case of B and B (1997) 21 Fam LR 676. The Full Court commented that where parents have separated, as a matter of practical necessity, either parent will have to make individual decisions when he or she has sole care of the children, but that both parents should be consulted in relation to major issues such as major surgery and place of education.
8. Persons with parental responsibility may include persons other than the biological or legal parents of a child. The term covers situations where a court has ordered that other persons—including extended family members, carers or the state (in the person of a particular minister)—have responsibilities for a child, either shared with or to the exclusion of the actual parents. The term ‘parental responsibility’ is therefore broader than that of ‘parents’.
9. The ALRC and AHEC came to the view that all those with parental responsibility for a child should be required to give consent for parentage testing on behalf of the child.[3] This approach was favoured in order to protect children against testing by one parent without the knowledge or consent of the other parent, and the possible consequences of the testing. The concern regarding ‘secret’ procedures may not be as palpable in a sterilisation case, but there is a risk that one party (a parent or other person) may be seeking sterilisation of the child without the knowledge and permission of others that should be involved in making this decision. Where all have been involved in and agree with the decision, it would not be overly onerous to ensure that all provide written permission as a part of the application process. The extreme consequences of a sterilisation warrant extra precautions and protections.
10. The ALRC and AHEC also considered the possible situations where one person with parental responsibility refuses consent to the parentage testing, or where one person with parental responsibility cannot be contacted despite reasonable efforts to do so.[4] In such circumstances it was recommended that a court be authorised to make a decision as to whether the testing be performed, having assessed the interests of all affected parties.[5] In the case of a sterilisation decision, the relevant guardianship board, tribunal or court already makes these decisions, but the noted absence of agreement of one of the persons with parental responsibility for the child, and the reasons for this, could be an important factor in reaching a decision in a particular case.
11. Taking this approach—that all persons with parental responsibility should provide written permission for the sterilisation procedure—does not necessarily mean that all of those persons have to make the application to the court, board or tribunal. However, it would be necessary for the applicant to show that all persons with parental responsibility support the application or, where there is a disagreement or inability to locate a relevant person, to argue that the procedure should be granted anyway. A person with parental responsibility who does not agree with the application should have the right to be involved in the proceedings.
Child’s representative
12. The Issues Paper asks questions about appointment of child’s representatives for sterilisation cases before boards and tribunals. When asking these questions, the first step is to consider what role the child’s representative plays in sterilisation cases in the Family Court, and whether that role is necessary or would be valuable in assisting boards and tribunals to reach their decisions.
13. It should be remembered that the child’s representative, as it has developed in the Family Court, is a ‘best interests’ representative—although the person appointed as the representative is a lawyer, the child’s representative is not the legal representative of the child and does not act upon the instructions of the child. The role is twofold: (1) to ensure participation of the child as is appropriate and ensure his or her voice is heard in the proceedings (consistent with Article 12 of the UN Convention on the Rights of the Child); and (2) to assist the court in reaching its decision by ensuring that all relevant evidence is presented, and that submissions independent of the parties are made to the court for its consideration. This second role is considered appropriate, even though family proceedings involve private parties, because of the need to ensure that the decision is made in the best interests of the child—this is different from other civil proceedings where the court relies only on evidence presented by the parties.[6]
14. In the discussion of sterilisation procedures in the Seen and Heard report, the ALRC and HREOC dealt with concerns about the child’s right to participate and be heard in these proceedings. It should not be assumed that because a child has an intellectual disability, he or she is unable to express an opinion or otherwise participate in proceedings. The appointment of a child representative is an important way to ensure that the child has an avenue for having his or her voice heard. This does not mean that the court must necessarily give strong weight to the wishes of the child. Individual capacity of the child should be evaluated, and appropriate weight given to those wishes—as in all family proceedings involving children.
15. The ALRC considers that the right of the child to participate in sterilisation proceedings is just as important when the matter is heard by a board or tribunal as it is in the Family Court. It is possible this could be facilitated through means other than appointment of a child’s representative.
16. Consideration also should be given to whether the other role played by the child’s representative—that of assisting the court by gathering and presenting evidence and independent submissions—is needed or would assist in proceedings before boards and tribunals. Questions need to be asked about the capacity of those boards and tribunals to gather all relevant evidence, rather than relying on that presented by the applicants. While it could be argued that the less formal processes of the boards and tribunals remove the need for a lawyer to be appointed to assist the board or tribunal, there is still a need for the child’s best interests to be represented independently in a hearing.
17. The rationale behind Queensland’s requirement that a legally qualified representative be appointed in sterilisation matters before the Queensland Tribunal—ie, that a child before the Queensland Tribunal should have the same rights as a child before the Family Court—is sound. Given that the factors in Re K (1994) FLC 92–461 clearly support the appointment of a child’s representative in all sterilisation cases, care should be taken in developing the uniform national guidelines that the same rights and processes are made available to children before state and territory boards and tribunals. The ALRC is not proposing that this can only be achieved through appointment of a child’s representative. However, it is necessary to ensure that the same roles—ensuring appropriate participation of the child, and independent representation of the child’s best interests—should be fulfilled in a similar way regardless of the venue of the proceedings.
Additional matters—educational campaigns
18. The ALRC and HREOC were aware of research indicating that a large number of unauthorised sterilisations take place. To counter this, the Seen and Heard report recommended that an awareness campaign should be conducted to provide medical practitioners with information about the legal requirements for approval of sterilisation operations on young people with an intellectual disability.[7]
19. The ALRC urges that funding for such a campaign should be provided, and a campaign conducted at the same time as the uniform application procedures are implemented on a national basis.
Additional matters—medical procedures other than sterilisation20. During the Seen and Heard Inquiry, the ALRC and HREOC received a number of submissions expressing concern that, in discussing the welfare jurisdiction of the Family Court, the Inquiry had only dealt with the sterilisation of young women with intellectual disabilities. While sterilisation cases are those most often encountered, submissions noted that equivalent jurisdictions overseas have addressed a broader range of medical procedures—including the cessation of life support, donation of non-regenerative tissue, and treatment for anorexia nervosa against a minor’s wishes—and that the Family Court of Australia was also beginning to see a broader range of cases, including parental refusal to consent to heart surgery, bone marrow donation, and gender reassignment.[8] Some of these cases involve children with intellectual disabilities, but many do not. In some cases the child may not be mature enough to make the decision, while in others the child may have a decision-making capacity, but the parents oppose the decision. In all cases, there is a need for a neutral body to evaluate the circumstances of the case, the views of all parties (including those of the child), and whether there is undue pressure being placed on the child to agree to a particular decision.
21. The ALRC and HREOC recognised the need for guidelines for the broad range of special medical procedures that could be dealt with in the Family Court.[9] The ALRC supports the action being taken to develop a nationally consistent approach to the authorisation procedures for lawful sterilisation of minors with a disability, and urges that this opportunity be used to consider development of similar guidelines, or expansion of the existing guidelines under consideration, to apply to a broader range of medical procedures cases that may be dealt with in the various jurisdictions.
Additional matters—pre-action guidelines to support alternative options
22. As a part of the ALRC and HREOC recommendation to develop guidelines for special medical procedures,[10] it was suggested that those procedures include a requirement that parties be provided with information about all alternatives to the procedure, that all options have been explored prior to the hearing and that suitable counselling has been undertaken. This came from research indicating that some parties had not been aware of alternative management strategies (such as medication or behavioural techniques) that, if put into place, would have relieved the ‘problem’ for the carer and the child without the need for the drastic medical procedure.[11] As the research showed, differing approaches in the various jurisdictions appeared to lead to very different results for young women. Pre-application procedures should be specified in the national uniform guidelines rather than left to individual jurisdictions to determine.
[1] See ALRC and HREOC, Seen and Heard: Priority for Children in the Legal Process (1997), [16.73]–[16.80] and recommendations 158–160.
[2] ALRC and AHEC, ALRC 96 Essentially Yours: The Protection of Human Genetic Information in Australia (2003), [35.155]–[35.181].
[3] Ibid, [35.70].
[4] Ibid, [35.175]–[35.180].
[5] Ibid, recommendation 35–9.
[6] The Family Law Council is currently completing a report that considers the role of the child’s representative in the Family Court in some detail.
[7] See ALRC and HREOC, Seen and Heard: Priority for Children in the Legal Process (1997), recommendation 158.
[8] These issues were dealt with in detail in S Brady DRP Submission 49.
[9] See ALRC and HREOC, Seen and Heard: Priority for Children in the Legal Process (1997), recommendation 160. The same guidelines should be applied in the Federal Magistrates Court, which had not commenced operation at the time of the Seen and Heard inquiry.
[10] See ALRC and HREOC, Seen and Heard: Priority for Children in the Legal Process (1997), recommendation 160.
[11] J Ford, ‘The Sterilisation of Young Women with an Intellectual Disability: A Comparison between the Family Court of Australia and the Guardianship Board of NSW’ (1996) 10 Australian Journal of Family Law 236.