Tangney, Maureen --- "Privacy Guidelines for HIV Testing" [1994] PrivLawPRpr 24; (1994) 1(2) Privacy Law & Policy Reporter 35

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Privacy Guidelines for HIV Testing

NSW Privacy Committee - Revision of Guidelines (No 65, November 1993)

The Privacy Committee of NSW has issued new Guidelines for HIV testing which supersede those last published by the Committee in 1986. The Guidelines are contained in the Committee's Report "Private Lives and Public Health - Privacy Guidelines for HIV Testing" (No 65, August 1993).

The Report examines the physical and information privacy issues associated with HIV testing, including informed consent to testing, the use and disclosure of test results, and the testing of specific groups within the community. Its central message is that HIV testing must be both voluntary and private, and test results must be subject to stringent data-protection standards.

In order for HIV testing to be voluntary, the person must give his or her informed consent to the taking of a sample of blood or other tissue, and to the collection of personal information which the test entails. Of course, this consent must be given prior to the taking of any blood or other tissue, or the performance of any test. In addition, the test must not be made a condition of providing a service or entry into a group.

In order for informed consent to be valid, each of the following criteria must be met:

(a) the person must be legally and clinically competent to give consent;

(b) the consent must be given freely, without coercion or undue persuasion;

(c) the consent must be explicit (that is, specific to HIV testing, as opposed to a broad consent given in relation to a series of tests);

(d) the person must be informed fully, accurately and specifically of all information which is relevant to the decision to seek testing, including the legal, medical, social and any other implications of test results.

In principle, the Committee opposes compulsory HIV testing. However, it accepts that in certain limited circumstances mandatory testing may be appropriate. Consistent with data protection principles, mandatory testing should only ever be conducted with the authority of law, such as under the Public Health Act, and never as a matter of policy.

The Report looks at seven situations and groups where mandatory testing has been suggested: autopsies; employment; health care (patients and medical staff); prisons; children (including wards, adoptees and foster children); pregnant women; and sex workers.

In each case, the Committee defines the circumstances under which testing (whether voluntary or mandatory) is reasonable and acceptable.

The Committee specifically rejects the compulsory testing of prisoners and recommends that the Prisons Act be amended accordingly.

The difficult issue of notification of the partners of infected people is also dealt with in the Report. The Committee recommends that partner notification without the consent of the infected person should only be permitted where the infected person has been counselled and given the opportunity to inform his or her partner; and it is the most reasonable measure, among available legal alternatives, to reduce a serious or imminent risk of HIV infection.

The Report contains a section on conditionally mandated testing. This is where HIV testing is made a condition of providing a service or entry into a group. According to the Committee, this type of testing is only acceptable where it is authorised by law; where a person is requesting treatment for HIV infection or an HIV/AIDS related condition; or for insurance purposes provided the test is justifiable on actuarial data and adequate non-discriminatory guidelines are in place.

On the issue of HIV testing for insurance purposes, it is interesting to note the recent Report on HIV/AIDS, Superannuation and Insurance which was prepared by consultants for the Federal Department of Health, Housing and Community Services. This Report found no actuarial evidence for continued discrimination by life insurance and superannuation by companies against people with HIV or AIDS.

Privacy protection is particularly vital in relation to questions of HIV status as there is still, regrettably, a great deal of community fear, ignorance, prejudice, discrimination and even violence associated with this public health problem.

In developing its Guidelines, the Privacy Committee consulted widely with community groups and the health profession to ensure that all points were considered and given careful evaluation. Copies of the Report may be obtained by writing to the Committee at GPO Box 6, Sydney, 2001; or by telephoning 252 3843

Maureen Tangney

Next issue includes: amendments to Telecommunications (Interception) Act 1979 (Cth); Childcare Rebate Act 1993 (Cth); Health Insurance Commission Act 1973 (Cth) - proposed amendments.