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Proposed Genetic Privacy and Non-Discrimination Bill

In brief: Allens Lawyer, Erica Davis, looks at the implications of the Genetic Privacy and Non-Discrimination Bill 1998 (Cth) and what you can do to prepare for potential changes to the law in this area.

Introduction

On 14 May 2002, Senator Natasha Stott Despoja reintroduced the Genetic Privacy and Non-discrimination Bill 1998 (Cth) (the Bill). If passed, it will have vast implications for genetic testing and research laboratories, employers and insurance providers and will also impact on the provision of health services, superannuation, pharmaceuticals and health administration. 

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Key elements of the Bill

As its title suggests, the two key elements of the Bill are:

  1. to protect the genetic privacy of individuals; and 
  2. to prohibit genetic discrimination - both against individuals and their families. 
    The Bill also sets out very rigorous requirements for the collection, storage and analysis of DNA samples. 

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Implications of the Bill if it is passed

Genetic testing already enables us to determine not only whether a person has or will develop a disease, but also whether a person has a predisposition to a disease or even a psychiatric disorder.

In particular, genetic test results obtained from genetic testing laboratories may affect a person's capacity to obtain either insurance or employment or both. 

Implications for genetic testing and research laboratories

Under the Bill, research laboratories that conduct genetic testing would be required to obtain a person's written, signed and dated authorisation to collect, store or conduct genetic tests on their DNA. The person must also be provided with a notice of 'rights and assurances'. The Bill sets out lengthy requirements for the content of the authorisation and the notice of rights and assurances. Once the DNA has been obtained, there are also onerous requirements on the laboratory in relation to how it stores and retains the DNA sample.

One of the most economically significant implications of the Bill for genetic testing and research laboratories is that it recognises the economic interests individuals have in their DNA. The authorisation required of a person to analyse their DNA has to include a provision that permits the person to negotiate the commercial use of their DNA. Consequently, individuals are entitled to seek economic benefit from the commercial use of their DNA. 

Implications for the life and disability insurance industry

The Bill will significantly restrict the use of genetic information by the insurance industry.

The Australian Life Insurance Industry is currently committed to its Genetic Testing Policy approved by the Australian Competition and Consumer Commission in December 2000. The ACCC authorisation of this Policy lasts until 13 December 2002. The Policy provides that life insurers will not request applicants to undergo genetic testing, but may access results from prior tests.

If the policy expires, insurers could potentially adopt mandatory genetic screening. Insurers could then deny or limit insurance to a person on the basis of that person's genetic predisposition to a disease, regardless of whether that person actually has the disease (as long as the discrimination is supported by actuarial data). If the disease to which that person is predisposed is hereditary, the insurer could also deny or limit insurance cover to a member of that person's family, in this case regardless of whether that family member actually has the disease or even the genetic predisposition to the disease.

Under the Bill, insurers cannot require an applicant for insurance cover to be subjected to genetic analysis. They can only request, require or use a person's prior genetic tests. Even then, the insurer cannot vary insurance cover or discriminate against that person or their family on the basis of genetic test results where that person or family member is presently healthy. For instance, if the prior genetic test results of a person indicate a predisposition to a particular disease, insurers cannot discriminate against the person on that basis unless and until there is medical evidence that the person has actually developed the disease. Similarly, if the disease is hereditary, insurers cannot discriminate against a family member of that person unless and until there is evidence that the family member has developed the disease.

Implications for employers

The Bill also seeks to make it more difficult for employers to discriminate on the basis of genetic information. 

Currently, employers could potentially require current or prospective employees to undergo genetic testing. The use of genetic information by employers is currently not the subject of specific legislation. Current anti-discrimination legislation may not prevent an employer from discriminating against an employee on the basis of a person's predisposition to a disease or psychological disorder (which may in no way be affected by the particular workplace). 

The Bill only allows genetic information to be obtained and used by an employer to determine whether an employee:

  • is genetically susceptible to substances at work with a mutagenic effect; or
  • possesses a genotype that is otherwise directly related to the work and consistent with business necessity.

A further restriction on an employer's use of genetic information is that it cannot use the information to restrict any right or benefit otherwise due or available to an employee or potential employee.

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Consequences of not complying with the Bill

Breaches of the Bill which relate to genetic privacy will be dealt with under the Privacy Act 1988 (Cth) by making a complaint to the Privacy Commissioner. Breaches which relate to genetic discrimination will be dealt with under the Human Rights and Equal Opportunity Commission Act 1986 (Cth) by making a complaint to the HREOC Commissioner.

In relation to any other breaches of the Bill, the court may order compliance with the Bill or any other equitable relief. The Bill also specifically provides that any person who negligently or wilfully collects, stores or analyses a DNA sample in breach of the Act, or induces another person to breach the Act in this way, is liable for damages.

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Australian Law Reform Commission (ALRC) and Australian Health Ethics Committee (AHEC) Joint Inquiry

After the Bill was first introduced in 1998, the ALRC and the AHEC were asked to consider jointly what type of regulation may be needed in this area. The passing of any legislation in this area is likely to follow informed debate over the final recommendations of the ALRC and the AHEC's Joint Inquiry. These are currently due to be delivered on 31 March 2003. 

An Issues Paper was released in March this year and a Discussion Paper outlining recommendations for reform is expected to be released in August this year with public consultation to follow. The Issues Paper recognised that current laws in Australia fail to protect an individual's genetic privacy and to protect an individual from genetic discrimination, especially in the employment and insurance contexts.

Preparing now for changes to the law in this area

It is likely that privacy and anti-discrimination laws will change in response to the continuing rapid advances in genetic technology.

So if you have a concern about what laws are ultimately passed in this area you should consider being involved in the public consultation process, which will follow release of the ALRC and AHEC's final recommendations currently due in March next year.

Allens will continue to keep abreast of legal developments in the area of genetic privacy and non-discrimination and can provide you with any assistance you may need to assess the likely impact of any new laws in this area on your organisation.

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For further information, please contact:

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