Capacity and health information

68.43 The provision of health services to, and the handling of health information about, children and young people is an area that has received more attention than others when considering the decision-making capacity of individuals under the age of 18.

68.44 Consent to the handling of health information about children and young people is related to, but different from, the issue of consent to medical treatment by or on behalf of a child or young person. Although some statutory provisions deal with consent to medical treatment,[73] until the late 20th century the common law assumed that a person under 18 years of age did not have the capacity to make a decision to consent to medical treatment on his or her own behalf. This position has changed. The pivotal case in this area is Gillick,[74] which was followed by the High Court of Australia in Re Marion.[75]

68.45 These cases affirmed the capacity of ‘mature minors’ to make their own decisions about medical treatment without parental involvement and reflect the concept of evolving capacities, which is evident in CROC.[76] Neither Gillick nor Re Marion, however, cover what should be done when a child or young person is assessed as not having capacity to consent to medical treatment, but asks that his or her health information not be disclosed to a parent.[77]

68.46 The ability of young people to keep information from their parents and others is often an important consideration when deciding whether to seek medical treatment. This issue often is discussed as ‘confidentiality’, but the Privacy Act and relevant state and territory health information legislation also regulate the disclosure of health information.

68.47 Young people experience a number of barriers in accessing health services, and lack of confidentiality (or a perceived lack of confidentiality) has been identified as a key problem.[78] In the United States, a study of high school students indicated that a majority of adolescents have health concerns they wish to keep confidential from their parents, and 25% reported that they would not seek health services because of confidentiality concerns.[79]

68.48 When a doctor sees a patient who is a young person without the attendance of a parent or guardian, the doctor must assess the young person’s capacity to provide consent to the recommended medical treatment.[80] Factors that will be considered by the doctor include: the maturity of the young person; the capacity to understand and appreciate the proposed procedure and the consequences of the treatment (as well as possible consequences of not receiving treatment); the gravity of the presenting illness and treatment; and family issues.[81] In most cases involving sensitive or serious health concerns, it is suggested that parental involvement be encouraged, and in many cases the involvement of supportive parents may be a key element of successful treatment.[82] It is not always possible or desirable, however, to involve a parent or guardian in this way.

68.49 Similar factors must be taken into consideration by a doctor when deciding whether information can be disclosed to a parent without the consent of the child or young person. The Australian Medical Association (AMA) has stated that, if a young person is able to make autonomous decisions regarding medical treatment and wishes the treatment to remain confidential, his or her doctor must respect and maintain that confidentiality.[83] There will, of course, be situations in which the doctor is required to disclose information. Even for adults, there are ethical, statutory and common law exceptions to the duty of confidentiality that require disclosure of information in certain circumstances.[84] Outside of these exceptions, some have argued that confidentiality should be maintained for any young person seeking treatment even if assessed to be incapable of consenting to the appropriate treatment.[85]

68.50 The issue of disclosure of health information to parents sparked public debate in 2003 when the Health Insurance Commission[86] changed its privacy policy to require young people aged 14 and over to give consent before their parents could access their Medicare records.[87] Medicare records include health information such as the identity and speciality of the health service provider, the type of service received, and also may reveal that the individual suffers from certain conditions such as asthma, diabetes, or mental health conditions.[88] The Medicare policy on access to records of an individual under 18 states that:[89]

  • if a child or young person of any age has his or her own Medicare card, no information related to the use of the card can be released to a parent or guardian without the consent of the child;[90]

  • for a young person aged 14 or 15 on his or her parent’s Medicare card, information generally will not be released without the young person’s consent, but a parent or guardian may request Medicare Australia to approach any treating medical practitioner to determine if the practitioner will disclose to the parent or legal guardian any information they hold about the young person’s treatment; and

  • disclosure of information relating to a young person aged 16 and over on his or her parent’s Medicare card will be made available to a parent or legal guardian only with the young person’s consent.[91]

68.51 Following publication of the changed privacy policy on Medicare records, public debate was split between support for young people’s privacy and those concerned that parental rights and family values were being undermined.[92] The Australian Government announced its intention to introduce the Health Legislation Amendment (Parental Access to Information) Bill to raise the age to 16 and over.[93] Following staunch opposition from certain backbenchers, the AMA and others, however, introduction of the Bill was deferred.[94] It has not since been introduced.

68.52 The Privacy Act and other Australian health information laws reflect the approach taken by medical practitioners and do not prescribe an age at which a young person is assumed to have the capacity to make decisions on his or her own behalf regarding their personal information.[95] The NPPs dealing with sensitive information (which includes health information) require the capacity of a young person to make decisions relating to disclosure of his or her health information to be assessed on a case-by-case basis.[96] This may not be possible where there is not a one-on-one personal relationship between the information holder and the individual, and this is reflected in Medicare Australia’s age-based policy for disclosure of records of young people. It is noted, however, that Medicare’s policy builds in an opportunity for individual assessment of a 14 or 15 year old to be made by a medical practitioner on the request of the parent.

[73] See Minors (Property and Contracts) Act 1970 (NSW) s 49(2), which covers persons aged 14 years and above; Consent to Medical and Dental Procedures Act 1985 (SA) s 6(1), which covers persons aged 16 years and above. See also New South Wales Law Reform Commission, Minors’ Consent to Medical Treatment, IP 24 (2004).

[74] Gillick v West Norfolk and Wisbech AHA [1986] AC 112. This case addressed the issue of whether a minor under the age of 16 years could give consent to contraceptive treatment without the parents’ knowledge or consent.

[75] Department of Health and Community Services (NT) v JWB (1992) 175 CLR 218. This case involved an application before the Family Court of Australia for the sterilisation of an intellectually disabled minor, and addressed the issue of limitations on a parent’s right to consent to such treatment. For a discussion of the two cases, see P Parkinson, ‘Children’s Rights and Doctors’ Immunities: The Implications of the High Court’s Decision in Re Marion’ (1992) 6 Australian Journal of Family Law 101.

[76] See also United Nations Committee on the Rights of the Child, General Comment No 4: Adolescent Health and Development in the Context of the Convention of the Rights of the Child (2003).

[77] J Loughrey, ‘Medical Information, Confidentiality and a Child’s Right to Privacy’ (2003) 23 Legal Studies 510, 512.

[78] Australian Medical Association, Submission to the Office of the Privacy Commissioner Review of the Private Sector Provisions of the Privacy Act 1988, 21 December 2004, 21. See also Australian Medical Association, Submission to the Senate Legal and Constitutional References Committee Inquiry into the Privacy Act 1988, 22 February 2005, 14; M Booth and others, ‘Access to Health Care Among Australian Adolescents: Young People’s Perspectives and Their Sociodemographic Distribution’ (2004) 34 Journal of Adolescent Health 97, 101–103.

[79] T Cheng and others, ‘Confidentiality in Health Care: A Survey of Knowledge, Perceptions, and Attitudes Among High School Students’ (1993) 269 Journal of the American Medical Association 1404.

[80] Guidance exists for doctors in dealing with young patients and confidentiality issues. See Medical Practitioners Board of Victoria, Consent for Treatment of Confidentiality in Young People (2004); Osteopaths Registration Board of Victoria, Consent for Treatment of Confidentiality in Young People (2005); New South Wales Association for Adolescent Health, Working with Young People: Ethical and Legal Responsibilities for Health Workers (2005).

[81] L Sanci and others, ‘Confidential Health Care for Adolescents: Reconciling Clinical Evidence with Family Values’ (2005) 183 Medical Journal of Australia 410, 411. Family issues may include cultural issues, and also where a parent is unable to act in a protective manner (eg, because of substance abuse or severe mental illness).

[82] T Stutt and L Nicholls, Submission PR 40, 11 July 2006.

[83] Australian Medical Association, Submission to the Office of the Privacy Commissioner Review of the Private Sector Provisions of the Privacy Act 1988, 21 December 2004, 21. See also Australian Medical Association, Submission to the Senate Legal and Constitutional References Committee Inquiry into the Privacy Act 1988, 22 February 2005, 15.

[84] For example, emergency situations with risk of death or serious injury, reporting of certain infectious diseases, or reporting of risk of harm to a child: L Sanci and others, ‘Confidential Health Care for Adolescents: Reconciling Clinical Evidence with Family Values’ (2005) 183 Medical Journal of Australia 410, 412. For a discussion of disclosure of confidential information in court, see Australian Law Reform Commission, New South Wales Law Reform Commission and Victorian Law Reform Commission, Uniform Evidence Law, ALRC 102 (2005), Ch 15.

[85] See, eg, New South Wales Commission for Children and Young People, Submission to the New South Wales Law Reform Commission on the Review of Laws Relating to the Consent of Minors to Medical Treatment, 15 August 2003. See also J Loughrey, ‘Medical Information, Confidentiality and a Child’s Right to Privacy’ (2003) 23 Legal Studies 510, 524–525.

[86] Now known as Medicare Australia.

[87] This policy change, which raised the age from 12 to 14, was based on legal advice: L Sanci and others, ‘Confidential Health Care for Adolescents: Reconciling Clinical Evidence with Family Values’ (2005) 183 Medical Journal of Australia 410. Legal advice to the Australian Government indicated that any further increase of the age would require legislative amendment: T Abbott (Minister for Health and Ageing), ‘Parents’ Access to Their Children’s Medicare Records’ (Press Release, 13 November 2003).

[88] ABC Radio 891 Adelaide, ‘Children’s Access to Medicare Cards: Interview with AMA Vice President Dr Mukesh Haikerwal’, Drive with Kevin Naughton, 6 November 2003.

[89] The policy is set out on the Medicare Australia form ‘Request for Obtaining Medicare and/or PBS Claims History for a Child’.

[90] A young person aged 15 and over can apply for a separate Medicare card without parental approval. A child or young person under the age of 15 can apply for a separate Medicare card with parental approval.

[91] There are limited exceptions to the non-disclosure principle where a young person is under the age of 18 and on the same card as the requesting parent, including access to a Medicare Financial Taxation Statement which shows a total benefit paid for the year but no details of medical services provided, and access to information about the progress of a Medicare claim made by the parent on behalf of the young person.

[92] See, eg, Catholic Health Australia, ‘CHA Calls for an Informed Public Discussion, Not Political Point Scoring Over Parental Access to Teenagers’ Medical Visits’ (Press Release, 10 June 2004). The AMA position is that a person aged 15 or over should have the right to keep his or her Medicare records confidential, as at that age people are making independent decisions about their lives, with some leaving school and entering the workforce. The AMA addressed this as a key health issue in the 2004 federal election: Australian Medical Association, ‘Youth Health—The Forgotten Area of Health Policy’ (Press Release, 9 September 2004); ABC Radio 666 2CN, ‘Medicare Under 16 Legislation: Interview with AMA President Dr Bill Glasson’, Morning with Louise Maher, 15 June 2004.

[93] The announcement included funding in the 2004–05 Budget for implementation of the Bill: Australian Government Department of Health and Ageing, Budget 2004–2005 Health Fact Sheet 5: A Health System Evolving Through Technology (2004). See also AAP, ‘Abbott Backflips on Teen Medical Records’, Sydney Morning Herald (online), 15 June 2004, <www.smh.com.au>.

[94] T Abbott (Minister for Health and Ageing), ‘Parental Access Bill’ (Press Release, 15 June 2004); P Hudson, ‘Backbencher Fears for Teen Lives’, The Age (online), 13 June 2004, <www.theage.com.au>; D Wroe, ‘Abbott Pulls Teen-Health Records Bill’, The Age (online), 16 June 2004, <www.theage
.com.au>.

[95] The Privacy Act 1993 (NZ), Health Information Privacy Code 1994 (NZ) and Data Protection Act 1998 (UK) also operate in this way.

[96] See also Office of the Federal Privacy Commissioner, Guidelines on Privacy in the Private Health Sector (2001).