Protection of human genetic information – will Gattaca become reality?
In brief: Lawyer Katrina Tucker discusses the Australian Law Reform Commission and the Australian Health and Medical Research Council's recent analysis of the implications of developments in the collection, use and disclosure of genetic information for Australian employment law.
Introduction
A society of genetically engineered human specimens as portrayed in the film Gattaca is no longer pure fantasy in light of current developments in gene technology. To ensure Australia does not become a place where the fate of an individual is pre-determined by their genetic make-up, the collection, use and disclosure of genetic information must be carefully regulated.
The Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee of the National Health and Medical Research Council (AHEC) are currently conducting a joint inquiry into whether, and if so to what extent, Australia requires a regulatory framework to:
- protect privacy of human genetic samples and information;
- provide protection from inappropriate discriminatory use of human genetic samples and information; and
- reflect on ethical considerations relevant to the use and collection of genetic samples and information.
The Joint Inquiry recently released Issues Paper 26 entitled 'Protection of Human Genetic Information' (the Issues Paper), the purpose of which is to raise issues relevant to the Joint Inquiry and to promote and encourage debate about the 'social, ethical and legal implications of developments in genetic research and technology'.
Scope
In considering whether or not genetic information differs from other types of health information to such an extent that a special regime to regulate its collection, use and disclosure is required, the Issues Paper examines the existing regulatory framework for the collection, use and disclosure of genetic information and then applies that framework to specific contexts in which genetic information may be important including, medical research, the use of human databases, health administration and evidence.
Although the Issues Paper raises a myriad of issues with respect to the collection, use and disclosure of genetic information, the scope of this article is limited to an examination of the issues that arise in the employment context.
Employment and the use of genetic information
Genetic information includes both DNA (dioxyribonucleic acid) sequence information as revealed by a genetic test and information that can be drawn from knowledge of that sequence. That is, genetic information can predict an individual's medical future.
In the future, an employer may require an applicant to undertake a predictive genetic test to determine whether the applicant has a genetic variant that increases the likelihood of that person developing symptoms of a genetic disorder due to the particular workplace or that renders the individual undesirable to the employer.
The Joint Inquiry expresses concern at the potential development of a 'genetic underclass'. That is, a class of people who do not have symptoms, but who have a susceptibility to a genetic disease. In addition, the use of genetic information by an employer raises the ethical consideration of whether an individual has a right 'not to know' that he or she has a predisposition to a genetic condition, particularly one that is incurable.
Australia has no legislation regulating the use of genetic testing by employers. Instead, the Joint Inquiry examines the extent to which existing legislation, including anti-discrimination, privacy and workplace relations law, applies.
Anti-discrimination
The Joint Inquiry focuses on the application of the federal anti-discrimination legislation namely, the Disability Discrimination Act 1991(Cth) (DDA), Sex Discrimination Act 1984 (Cth) (SDA) and the Racial Discrimination Act 1975 (Cth) (RDA) and provides that in some circumstances, discrimination on the grounds of an individual's genetic make-up may, pursuant to such legislation, be unlawful.
The Joint Inquiry notes that the DDA will protect an individual from employment discrimination unless the employer can show that the individual is incapable of fulfilling the essential requirements of the position and that it is an 'unjustifiable hardship' on the employer to make adjustments so that the employee can perform such requirements.
Accordingly, the Joint Inquiry queries whether or not an individual currently able to perform the inherent requirements of a position may lawfully be considered unable to do so on the basis of a possible future inability.
In addition, the use of genetic information by employers to discriminate against employees and applicants may be prohibited by the DDA on the basis that such treatment is discrimination against a disability or a propensity to a disability.
The SDA may apply where there is discrimination based on a genetic disorder that manifests in only one of the sexes while the RDA may apply if an employer was to discriminate on the basis of a racially specific genetic disorder. The Joint Inquiry also considers the application of the Human Rights and Equal Opportunities Commission Act 1984 (Cth).
Yet to be resolved is:
- whether any deficiencies in the existing regulatory framework should be dealt with by new legislation or by amending the current laws; and
- how a genetic predisposition should be considered in relation to an individual's ability to fulfil the 'inherent requirements' of employment.
Workplace relations
The Joint Inquiry considers in the Issues Paper whether an employer should have access to employees' and applicants' genetic information for occupational health and safety reasons and if so, how such access should be regulated.
The Workplace Relations Act 1996 (Cth), Occupational Health and Safety (Commonwealth Employment) Act 1991 (Cth) and other related legislation, the common law, industry standards and codes of practice and the workers compensation regime all regulate employers' treatment of employees.
Occupational health and safety legislation places a duty on an employer to provide for the health and safety of employees. At the same time, an employee is required to ensure his or her own safety and that of other employees and third parties.
Therefore, in the future, an employer may argue that it has a duty to screen out employees or applicants whose genetic conditions pose a health risk to the safety of others. In addition, if a workplace exposes employees to dangerous substances, an employer may want to genetically monitor its employees and remove an employee from that workplace if a genetic modification occurs or the employee is genetically susceptible to a harm in the workplace.
Interpretation of genetic information
The Joint Inquiry expresses concern that, unless the community is educated about the true predictive nature of genetic tests and samples, genetic information may be misinterpreted and misused. One argument put forth is that an individual should be protected from employment screening unless his or her condition poses a 'direct and substantial risk' to the public.
Privacy
An employer's right to collect, use and disclose personal information is regulated by the Privacy Act 1988 (Cth) (the Privacy Act) unless it forms part of an employment record, that is, a record containing personal information relating to the employment of an employee.
The Issues Paper states that employee records are exempt under the Privacy Act because the Federal government believes that such information is better dealt with in the workplace relations legislation, but the Joint Inquiry is concerned that the workplace relations legislation does not afford employees the same level of protection.
Submissions
Comments and submissions relating to any aspect of the Issues Paper should be sent to the Executive Director of the Australian Law Reform Commission by 14 January 2002.
A Discussion Paper containing an analysis of relevant issues will be published early in 2002. The final report containing the Joint Inquiry's recommendations is to be presented to the Attorney-General and the Minister for Health and Aged Care by 30 June 2002.