Protection of Human Genetic Information

Protection of Human Genetic Information



January 2002


  1. The ACTU submission is limited to issues related to the collection, disclosure and use of genetic information by employers in the context of the employment relationship.
  2. The ACTU has not been convinced that there are circumstances compelling enough to permit employers to require employees to undergo genetic testing or to provide information, given the massive emotional and financial implications contained in the gathering of this type of data.
  3. Although sometimes justified in terms of protecting workers’ health and safety at work, the ACTU submits that this is an inversion of the fundamental principles; employers are responsible for providing employees with a safe and healthy workplace, while work-related illnesses and injuries are caused by hazards in the workplace, not by employees’ genetic make-up.
  4. Given the lack of overwhelming evidence that employees would be assisted by employer access to genetic information, the ACTU submits that this should be specifically prohibited.


  1. There must be serious doubt as to whether employees are currently protected from discrimination based on a genetic predisposition to a particular illness or condition.
  2. The application of anti-discrimination legislation to employees who do not have a current impairment is uncertain, to say the least. Minter Ellison partner specialising in workplace relations and employment law, Dan Williams, has said:

“There is also a very significant and unresolved issue about whether a genetic propensity to develop a disability in the future is itself a current impairment within the meaning of the anti-discrimination laws.

“If a test reveals that an employee is far more likely than most people to develop a particular form of cancer, for example, does he or she have an ‘impairment’ within the meaning of the legislation? The legislative definitions were written long before genetic testing became available and they are arguably inadequate to deal with this issue.”[1]

  1. An employee dismissed as a result of the findings of genetic testing might be able to take action under the termination of employment provisions of the Workplace Relations Act 1996. The WRA prohibits termination for reasons including physical or mental disability[2], but there must be some considerable doubt as to whether a person who has a genetic predisposition to developing a disability could be said to have been terminated by reason of a disability.
  2. The WRA includes an exemption where the discrimination is based on the inherent requirements of the particular position concerned.[3] It is suggested in the Issues Paper that this could be applicable where the nature of the genetic predisposition could be linked to the nature of the job; for example, where the job would be likely to exacerbate the condition, or where an employee with the condition would pose a particular hazard to himself or herself or to fellow employees.
  3. If this view is correct, the ACTU strongly opposes such an exemption, which should not be applied to an employee who, by definition, has not been found unable to meet the inherent requirements of the job. This issue highlights the difference between genetic testing, and ordinary employment-related “medicals” or drug and alcohol testing. While the latter can be problematic, and have discriminatory implications, used properly they allow for conditions to be identified and, if possible, treated. Drug and alcohol testing should be confined to determining whether the employee has an existing impairment which might affect their performance. In the case of genetic testing, by contrast, there is generally no more than an increased probability of the person acquiring a condition which could create a problem in the workplace.
  4. The ACTU position is that screening out workers from particular jobs because of possible hazards is wrong both in principle and from a practical point of view. Would all potential employees with a predisposition be excluded, or only those above a certain level? How would those decisions operate in the labour market; that is, would employers' attitude to employees with particular predispositions vary according to how easy or difficult it was to attract suitable labour?
  5. To reiterate the introduction to this submission, the focus in workplace health and safety needs to be on hazard removal, not on a mathematical calculation of risk based on genetic testing.
  6. The WRA also provides for a termination to be challenged on the grounds that it is harsh, unjust or unreasonable[4], and it would appear likely that the Industrial Relations Commission could find that a dismissal based on genetic information would meet that definition. However, without specific provisions prohibiting terminations based on such information, each case would be treated on its facts and circumstances, so that clear principles would not necessarily be developed.
  7. It should also be noted that while a remedy might be available under the WRA for terminations based on genetic information, no provisions exist in relation to a failure to employ a person, or otherwise discriminating against an employee in his or her employment, short of termination. A similar position applies under state anti-discrimination and industrial relations legislation.

Recommendation 1

In light of the inadequate protection offered by federal and state anti-discrimination and industrial relations legislation, the ACTU recommends the enactment of specific legislation prohibiting discrimination in relation to employment based on:

(i)an employee or potential employee’s refusal to submit to genetic testing or to disclose genetic information; and/or

(ii)any genetic information about the employee held by the employer about the employee or potential employee.

Unless clear evidence can be demonstrated of circumstances where genetic testing can be shown to be, on balance, beneficial to employees, the ACTU recommends that no exemption be provided based on the requirements of the job.


  1. As stated earlier, the ACTU is not aware of any situation in which mandatory genetic testing could be justified. None of the examples given in the Issues Paper indicate that a need for such testing exists. In every case cited, a preparedness by employers to address hazards, even if this involves some expense, would be a more effective way of addressing concerns.
  2. In the case of pilots, for example, because of the grave potential dangers of a heart attack while flying, a number of measures are already required. In Australia, planes carrying more than a small number of passengers must have two pilots. This is, of course, the best way of ensuring that a health problem of one pilot will not end in disaster. In addition, all pilots undergo regular mandatory health checks and are not allowed to fly unless fit. In the case of heart disease, the ACTU understands that pilots with this condition are permitted to fly after treatment, including bypass surgery.
  3. Technological developments have already taken the aviation industry to the point where modern jets can be flown by remote control, and can, if fitted with the necessary systems, be landed on autopilot at airfields with special guidance beacons.[5] The point of this example is to illustrate that there are always alternatives in dealing with potential hazards, and that there are choices as to the priorities in research and development. The advantage of developing autopilot capacities for the airline industry is that it would assist in many emergencies, not just those which might be related to the genetic make-up of the pilot.
  4. In the case of bus drivers, there is no stronger argument for mandatory testing than there is for any employee who, if suddenly incapacitated by a heart attack or stroke, such as truck drivers, building workers, forklift drivers and many others, could cause harm to others. If employers are concerned about bus passengers, they could start by fitting seat belts. Most road accidents, whether or not involving buses, are caused by recklessness, speed, alcohol and other drugs and poor roads. Bus drivers, like truck drivers, may take risks if pressured by unrealistic timetables or requirements to work long hours in order to achieve reasonable remuneration. These issues should all be addressed, rather than the practically irrelevant issue of drivers’ genetic composition.
  5. Similarly, removing workers with a genetic predisposition to some cancers from work environments where they may be exposed to conditions putting them at additional risk is an unacceptable solution to chemical hazards in the workplace. The reason is simple. While there might be some statistical validity to such an approach, the fact is that many workers not showing some genetic predisposition, either because they don’t have one or because of inadequacies in the testing process, will be exposed and will develop cancer. Removal of hazards for all workers cannot be substituted by removal of some workers.
  6. If genetic testing was allowed, it is certain that it would be misused in a number of significant ways.
  7. First, it would be used to screen out employees who might have only a slightly higher predisposition to acquire a condition than the general population. Many employers, would not distinguish between a predisposition and a certainty, while the possibility of false negatives and positives would not necessarily be taken into account. For example, a genetic predisposition to alcoholism could rule out an employee who, in fact, did not drink alcohol.
  8. Second, it would be used as a cheaper and easier alternative to addressing hazards in the workplace and so, ironically, increase the risk to employees and the public, given that genetic testing cannot say, in the case of heart disease, for example, who will and who will not suffer a heart attack.
  9. Third, it would be used by employers to screen out employees whose predisposition had no direct relationship to work, but who might be likely to take considerable time off work. This could apply not only to predispositions to conditions which might affect the employees themselves, but those which might affect children. After all, an employee whose child was very sick might not be as reliable as one with a healthy family. This would take the type of discrimination against employees who have made workers’ compensation claims, for example, which is common today, to far greater lengths.
  10. While it might be argued that genetic testing of employees should be permitted with the consent of the individual, this does not take into account the nature of the power relationship between an employer and an employee, particularly where testing is required as part of the pre-employment process. Forced to choose between a test and a job, many employees will “choose” the former, with those most likely to do so being those with the least knowledge of the issue involved, and with the least financial ability to refuse a request from a potential employer.

Recommendation 2

The ACTU recommends that employers be prohibited from requiring, requesting, collecting or disclosing information derived from genetic testing of current or potential employees.


  1. The ACTU strongly opposed the exemption for employment records in the amendments to the Privacy Act extending it to the private sector.
  2. Many employers hold a great deal of sensitive information on their employees, including health information. There is nothing in the Privacy Act to prevent an employer passing on this information to a potential employer of a past or current employee.
  3. Many employers see employees’ use of sick leave or workers’ compensation as an indication of their suitability for employment.
  4. It appears that there is potentially some trade in such information, as was seen last year when a small company established an internet site and invited employers to submit names and details of employees who took, in their view, excessive sick leave. The plan was to charge potential employers a fee for access to the date base so obtained. While this project does seem to involve some breaches of the Privacy Act (although there is also an exemption for small business), it does indicate the level of interest in the subject of employee absenteeism.
  5. There can be little doubt that genetic information, if obtainable by employers, would be circulated to potential employers and others, particularly in the private sector.

Recommendation 3

The ACTU recommends that the Privacy Act be amended to remove the exemption for employee records, at least for sensitive information, particularly health information and including genetic information.


  1. The use of genetic testing and/or collection of genetic information for employment purposes has the potential of creating enormous personal difficulties for the employees involved and for their families.
  2. The right of employees to choose not to find out genetic information or, where this is known, to keep it private, should override any interests which employers might have in that information.
  3. Consideration also needs to be given to the labour market implications of widespread employment-related genetic testing.
  4. Employers could find themselves required by insurers to minimise risk by not employing people with predispositions to disabling conditions, or face higher workers’ compensation premiums. Collection of genetic information could also affect general workplace salary continuance insurance arrangements which are currently offered to all employees in some workplaces.
  5. If such testing and data collection became widespread, it could very well lead to the development of an ”underclass”, whose employers, assuming they were employed, would be unwilling to invest in their training and development, or to offer them long-term advancement opportunities.


  1. The issues associated with genetic testing and data collection are clearly very complex and sensitive.
  2. The ACTU submits that an extremely cautious approach should be taken to the use of such information and that in the workplace context, in particular, the rights of the individual must take precedence, at least until a compelling case has been made out for the benefits of a different approach.
  3. At the present time, the dangers associated with permitting genetic information to be available to employers are obvious and serious, while the case for any beneficial effect, if it exists, has not been demonstrated.



[1]Genetic Testing Needs Careful Scrutiny News release issued on behalf of Minter Ellison 14 May 2001

[2] s170CK(2)(f)

[3] s170CK(3)

[4] s170CE

[5] Roger Franklin “Why marshal arts won’t stop hijackers” The Sunday Age 30/12/01 p10