[email protected]
www.alhr.asn.au

8rd June 2003

Ms Maureen Tangney
Acting Privacy Commissioner
Privacy NSW
PO Box A2122
Sydney South NSW 1235

By email: [email protected]

Dear Acting Commissioner
Draft Guidelines on Consent and Capacity under the Privacy and Personal Information Protection Act 1998 (NSW)
We are pleased to provide comments on the draft guidelines. The attached submission is based on the extensive experience of our members working in the area of human rights law at both state and federal level.

We would be happy to discuss any aspect of our comments further.

Yours sincerely,

Simon Rice OAM
President
Australian Lawyers for Human Rights

Response to the Privacy Commission's
Draft Guidelines on Consent and Capacity under the Privacy and Personal Information Protection Act 1998 (NSW)

30 May 2003

INTRODUCTION

Australian Lawyers for Human Rights Inc (ALHR) is a network of Australian lawyers active in furthering awareness and advocacy of human rights in Australia.

Through training, publications and advocacy, ALHR promotes the practice of human rights law in Australia, and works with Australian and international human rights organisations to achieve this aim.

ALHR welcomes the initiative of the draft guidelines, and this work by the Privacy Commission to provide a framework for considering these issues and providing guidance into the future.

Privacy and consent issues are extremely important for people with disabilities and others who have high levels of institutional and agency interaction. Consideration of alternative consent mechanisms is an important step in ensuring equal protection under privacy legislation for those who might otherwise be disadvantaged by the very mechanisms in place to protect privacy rights.

PRINCIPLES UNDERPINNING THE DRAFT GUIDELINES
ALHR commends the opening acknowledgment that the guidelines are underpinned by fundamental human rights principles set out in the UN Declaration on the Rights of Persons with Disabilities and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities,¹ and reflected in both Federal and NSW disability services principles, being:
(a) the right to respect for dignity and autonomy;
(b) the right to participation in decision-making
(c) the right to have their values, wishes, preferences and opinions respected by others; and
(d) the right to equality before the law including equality of rights to protection of personal privacy under the PPIP Act.
ALHR agrees that these are the four principles which should underpin guidelines on consent.

The conceptual framework of the guidelines Consent and CAPACITY/ INCAPACITY

The draft guidelines recognise alternative consent mechanisms. However ALRH is concerned that the way in which they do so emphasises the individual’s disability.

The requirement to provide consent imposes an obligation on any individual seeking to protect their privacy rights under the legislation. This obligation may be onerous depending on the characteristics of the particular person. The draft guidelines single out people who use alternative consent modes because of disability, ALHR submits that e Privacy Commission should consider applying the Guidelines to consent issues generally.

The concept of ‘capacity/incapacity’ operates in not only privacy law, but in all areas of law. It excludes many people, but primarily people with disabilities, from the usual mechanisms of the Privacy and Personal Information Protection Act 1998 (NSW) ("the PPIP Act"). The use of language reinforces traditional concepts of disability, where people with disabilities are seen as living separately from the mainstream community. This approach fails to incorporate the principles in our international human rights obligations.

UNIVERSAL ACCESS MODELS
The principle of universal access is central to the social model of disability. It is the social model of disability which underpins current international human rights instruments as they apply to people with disabilities.² Provision of privacy rights through consent – the objective of the PPIP Act – need not and should not distinguish among people on the basis of capacity.
A universal access approach is based on the concept that disability:
… is an infinitely various but universal feature of the human condition. No human has a complete repertoire of abilities, suitable for all permutations of the physical and social environment.³
Put another way, "the issue of disability for individuals…is not whether but when; not so much which one, but how many and in what combination." ⁴
A universal approach accepts human variation as an inherent characteristic of society. The principle of universal access ensures that legislation, social policies and environments reflect, as the norm, the full range of 'repertoires’ that exist in society.⁵
Legislation plays a vital role in protecting fundamental human rights. ALHR submits that it should not use language that reinforces notions of differentiation, and implies that consent is not possible because the individual lacks capacity.

Separation on the basis of Capacity

ALHR is concerned that the underlying premise of the draft guidelines is to separate individuals who use alternative decision making mechanisms from access to the general mechanisms of the PPIP Act. This wrongly excludes individuals on the basis of the notion of ‘capacity to consent’, distinguishing them on the basis of a characteristic that pertains to them in relation to their mode of decision-making.

This differentiation is inconsistent with current international principles as reflected in the Standard Rules on the Equalization of Opportunities of People with Disabilities. In the area of policy-making and planning, Rule 14(3) requires that:
States will ensure that disability aspects are included in all relevant policy-making and national planning.
3. The needs and concerns of persons with disabilities should be incorporated into general development plans and not be treated separately.⁶
The structure of the draft guidelines establishes two distinct mechanisms based on an artificial notion of capacity.
ALHR submits that the Privacy Commission should consider adopting a universal access mechanism in relation to consent under the PPIP Act.

CONSENT AS A CONTINUUM

The notion of capacity should be judged in terms of the mechanisms, not individuals. The central principles of the PPIP Act should apply to all individuals, as the accordance to them of their fundamental human rights.

The draft guidelines recognise that, in relation to consent, there is no “one size fits all” test for capacity. However, the guidelines fail to apply this within their structure. The fact that consent is achieved through a variety of mechanisms should not be premised on the implied deficiency of an individual.

ALHR submits that the terminology and application of the PPIP Act should reflect a continuum of consent modes, accorded to all individuals that is applied to meet individual circumstances.

¹ . Adopted by the United Nations General Asembly, 48^th Session, resolution 48/96 [on-line] http://www.un.org/esa/socdev/enable/dissre00.htm