Genetic screening for work-related susceptibilities

32.19 The first potential use of genetic information in employment is genetic screening for work-related susceptibilities. The NRCOHSR has noted that:

It is common practice in Australia for larger employers to require some form of pre-employment health screening. The general rationale for such screening is to determine a potential employee’s fitness for work.^[18]

32.20 Against this background, employers might seek to use genetic information in order to screen for a genetic susceptibility (or predisposition) to a work-related condition. Family medical history or genetic test results may disclose that a person has an inherited predisposition to a condition that may be triggered by exposure to certain workplace hazards.

32.21 In 1990, the United States Office of Technology Assessment reported that about 50 genetic mutations had been identified as affecting susceptibility to specific environmental agents.^[19] For example, individuals with a genetic deficiency in the production of a particular protein—alpha-1 antitrypsin—are more susceptible to lung disease if exposed to dusty work environments.^[20] It has also been claimed that a genetic mutation may affect susceptibility to a form of occupational overuse syndrome known as ‘carpal tunnel syndrome’.^[21] Individuals with a genetic mutation of this kind may be hyper-susceptible to a particular workplace hazard.

32.22 Currently, an employer can ask a job applicant or employee to provide family medical history or genetic test information to identify whether the person has a susceptibility to a particular work-related condition, pursuant to the employer’s occupational health and safety obligations. In some industries, employers are required to conduct pre-placement health assessments. For example, the National Standard for the Control of Inorganic Lead at Work (the Lead Standard) provides that employers must arrange for each employee to be examined by an authorised medical practitioner prior to commencing work in a lead-risk job. The Lead Standard provides that an individual may be excluded from working in a lead-risk job in a number of circumstances, including on the basis of a personal medical condition or medical history.^[22]

Issues and problems

Relevance of genetic information

32.23 The Inquiry has heard a number of concerns regarding the use of genetic screening for work-related susceptibilities. One concern relates to the accuracy and reliability of predictive genetic tests and family medical history in identifying real risks to an applicant or employee’s future health and safety at work. As most genetic conditions are multifactorial in nature, genetic information often indicates no more than a possibility that an individual will suffer a disease or condition in future. The individual may never develop the disease or condition; if they do, its onset might occur late in life. Alternative forms of health assessment, such as regular medical examinations, may be a more useful indicator of risk.

32.24 NRCOHSR stated in its submission that:

It is important to emphasise the misconceptions about the value of genetic screening for preventing occupational injury and disease. Determining the contributors to adverse health outcomes is an evolving and complex area. In regard to work environment exposures, many substances are not well tested and knowledge of health effects is limited, especially in regard to long-term health effects. Moreover, many conditions are multi-factorial and may be caused by a combination of environmental exposures and/or genetic factors. It would be imprudent to place too much emphasis on the ‘science’ of genetic screening to unravel the causes and prevention of disease when significant gaps exist in understanding the contribution of occupational exposures to disease.^[23]

32.25 The Australian Council of Trade Unions (ACTU) expressed the concern that employers might misuse genetic screening programs to test for mutations that are unrelated to workplace exposures but which might affect the person’s future health and ability to work, potentially impacting on employers’ administrative costs through sick leave or replacement costs.^[24] As noted in Chapter 30, there is evidence of this occurring in the United States.

Timing of screening

32.26 A number of submissions expressed the view that genetic screening should only be conducted once a job offer has been made to a job applicant.^[25] The Anti-Discrimination Board of NSW explained the basis for this approach:

In order to ensure that tests are only carried out where absolutely necessary, we consider that the proposal should reflect the fact that employers should only seek to determine any susceptibility of the applicant once the employer has selected their preferred candidate. This will ensure that employers will not test all applicants or some applicants and reject any applicants where there may be any prospect of susceptibility.

If the latter approach is taken, then it is often more difficult to establish that the test result was the reason that a particular applicant was not selected and hence the employer’s discriminatory use of the information is harder to prove.^[26]

Mandatory or voluntary screening?

32.27 If employers are permitted to collect genetic information for the purpose of susceptibility screening, it is necessary to consider whether screening should be conducted on a mandatory or voluntary basis. Refusal to participate in a mandatory screening program might result in adverse impacts on an individual’s job application or employment prospects.

32.28 Several international instruments emphasise the need for free and informed consent to medical and other procedures.^[27] A number of submissions expressed concern about the undermining of free consent in relation to mandatory screening programs and suggested that screening should be conducted only on a voluntary basis.^[28] The Department of Health and Ageing submitted that mandatory genetic screening has the potential to undermine an individual’s ‘right not to know’ about a possible genetic predisposition or condition.^[29]

32.29 Some submissions suggested that employers should warn employees about potential workplace hazards and allow them to seek private medical advice about the risks involved.^[30] The Australian Nursing Federation submitted:

If employers provide all relevant information about the work to be undertaken and its possible effect on the health of all current and potential employees then the employee can, in consultation with their own medical officer, make an informed decision about the suitability of the employment or the need for genetic testing.^[31]

32.30 Dr Paul Henman emphasised the need to protect employee autonomy:

If such a link can be made between genetics and the workplace environment, then the appropriate action is for employers to advise employees that X in the workplace environment may bring about Y in people with a genetic predisposition. This allows employees control over their own genetic information and to decide whether to take steps based on the implications of their workplace environment and what steps they may choose to take. Anything else takes control away from the individual.^[32]

32.31 The Anti-Discrimination Board of NSW and the Law Institute of Victoria were of the view that, where an employee is given adequate information about the risks but elects not to be screened or to continue to work in the environment in question despite an identified susceptibility, this will significantly reduce the likelihood that the employer will be liable for breach of its duty of care.^[33]

32.32 Associate Professor Margaret Otlowski has commented that the extent of the employer’s duty to employees with regard to genetic screening is unclear. She notes that the scope of the duty of care may be that the employer must simply inform applicants or employees of known potential hazards in the workplace and offer them screening where it is available, or at least advise them of its benefits. If the employer meets required safety standards and the applicant chooses to take the risk by declining testing or pursuing employment despite an identified susceptibility, the employer would not be in breach of its duty of care.^[34]

Response to hazards in the workplace

32.33 One of the principal concerns raised in submissions in relation to genetic screening was that employers might seek to comply with their occupational health and safety duties by excluding susceptible employees from the workforce rather than by eliminating workplace hazards.^[35] Margaret Otlowski has commented:

While employers’ use of genetic screening may be advocated on the basis of enabling job applicants to make ‘informed choices’ about whether to take up a particular position, the reality is that the job is unlikely to be offered to a person who is identified as at risk. Further, allowing employers to use genetic testing for the purpose of selecting their employees would deflect attention away from their obligation as employers to endeavour to provide a workplace which is safe and without risk to health for all employees.^[36]

32.34 The ACTU submitted that the most effective way for employers to protect the safety of susceptible employees is to provide a safe workplace, free from potential exposure to hazards.

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. … 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. … 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.^[37]

Options for reform

Prohibition on the use of genetic information

32.35 The ACTU and several other individuals and organisations supported a complete prohibition on the collection and use of genetic information to identify an applicant or employee’s susceptibilities.^[38] This approach protects the privacy of employees’ genetic information and emphasises the employer’s responsibility for providing a safe workplace.

32.36 However, the Inquiry does not consider this approach to be realistic in light of the practical impossibility of completely eliminating all hazards from the workplace. In addition, some genetic testing may be of benefit to employees by permitting the early avoidance of potentially harmful exposure.

Permission to use family medical history

32.37 A second option is to permit the collection and use only of family medical history for the purpose of susceptibility screening. The United States’ Executive Order (discussed in Chapter 31) is an example of this model.^[39] A federal department or agency may request family medical history information but not genetic test results from an applicant or employee. This information may be used to determine whether to conduct further medical evaluation to diagnose a current disease, medical condition or disorder that could prevent that person from performing essential job functions. In relation to an employee, the information may also be requested if the department or agency reasonably believes that the employee will pose a direct threat due to a medical condition.^[40]

32.38 However, this model does not appear appropriate in the context of employment involving exposure to hazardous substances. Family medical history information may be insufficient in these circumstances to identify relevant susceptibilities unless other family members have been exposed to similar work environments.

Permission to use genetic information subject to limitations

32.39 A third option is to permit the collection and use of genetic test results and family medical history for the purpose of susceptibility screening, subject to strict limitations. A number of overseas jurisdictions have adopted this approach. In Denmark, for example, employers are permitted to collect health data where it is relevant to the employee’s ability to perform the specific work and to determine the employee’s risk of developing or contracting illnesses if the conditions of the working environment make it reasonable and appropriate to do so in relation to the individual, or other employees.^[41]

32.40 The Inquiry received a number of submissions supporting this option, provided strict safeguards are implemented in relation to the collection, use and disclosure of genetic information.^[42] The Centre for Law and Genetics emphasised that the employer’s primary focus should be on elimination of hazards in the workplace, but gave limited support to the use of susceptibility screening.

In some limited circumstances, employers would be justified in having access to an employee or job applicant’s genetic information for occupational health and safety reasons such as determination of whether an employee has a genetic susceptibility to a disease that may [be] triggered by substances present in the workplace and there would be general support for such use in the interests of employees/applicants for employment.^[43]

32.41 The Centre cited the United Kingdom’s Nuffield Council on Bioethics’ guidelines as a starting point for this consideration. The Nuffield Council recommended that genetic screening for increased occupational risks should be considered only where:

• there is strong evidence of a clear connection between the working environment and the development of the condition for which the screening is conducted;
• the condition in question is one which seriously endangers the health of the employee or is one in which an affected employee is likely to present a serious danger to third parties; and
• the condition is one for which the dangers cannot be eliminated or significantly reduced by reasonable measures taken by the employer to modify or respond to the environmental risks.^[44]

32.42 In its submission to the Inquiry, the NRCOHSR also recommended that genetic screening be limited to those circumstances where:

• it is reasonable to expect that the work be performed;
• (reasonably) practicable control measures have been implemented to control risks in the work environment;
• taking into account these control measures a person might still endanger him/herself or others, including members of the public, due to a particular genetic characteristic or condition; and
• there is a reliable method of testing or screening that indicates the presence and nature of the genetic characteristic or condition.^[45]

32.43 The Centre for Law and Genetics stressed that susceptibility screening should be based on the principle of informed consent. Where an employee withholds consent to screening, or is identified as susceptible but desires to continue working, the Centre did not recommend excluding the person from employment, but suggested:

The best way to ensure that the voluntariness of consent is not undermined, is to avoid impediments to such a person being engaged, but then to give some defence against liability to employers who have fully complied with occupational health and safety best practice.^[46]

32.44 The Centre recommended that an independent review process should objectively determine those circumstances in which it is appropriate to undertake genetic testing. The Centre also suggested that an independent body should oversee the use of genetic information obtained by employers to ensure it is used only for the limited purpose for which it was obtained.^[47]

32.45 The Anti-Discrimination Board of NSW emphasised the need for clear guidelines in relation to genetic testing in employment, and proposed a comprehensive genetic testing code of practice that would provide a general prohibition on requesting genetic information and testing in employment with specific exceptions. The code would include guidelines on employment testing, informed consent, counselling, and rights and obligations under relevant legislation. Sections of the code could be incorporated into industry codes of practice under relevant occupational health and safety legislation.^[48]

Inquiry’s views

32.46 The Inquiry is of the view that it is not appropriate to impose a complete prohibition on the use of genetic information by employers to screen for work-related susceptibilities. The Inquiry recognises that the elimination of hazards from the workplace is the most effective means of protecting employees from safety risks and that, as technology advances, this may become easier to achieve. However, complete elimination of workplace hazards may not be possible in practice in some workplaces. For example, exposure to heat and dust is unavoidable when fighting fires, and exposure to trace quantities of substances such as beryllium may be unavoidable in some manufacturing processes (see Chapter 29). In addition, family medical history alone may be insufficient to identify relevant susceptibilities unless other family members have been exposed to similar work environments.

32.47 Chapter 29 outlined the interests of employers, employees and the public in relation to the use of genetic information in employment. Arguments in favour of genetic screening for work-related susceptibilities include its potential to protect susceptible employees from avoidable risk to their health and safety, and to protect employers from potential legal liability and financial costs for illness suffered by susceptible employees. Arguments against screening include the potential for unfair discrimination, invasion of privacy and misuse and misinterpretation of genetic test results.

32.48 The Inquiry considers that, consistently with the principles underpinning the occupational health and safety regime in Australia, the primary focus should be the elimination of risks from the workplace rather than the exclusion of susceptible applicants and employees. The Inquiry therefore recommends that employers should not conduct genetic screening of employees for susceptibility to work-related conditions if the environmental risks can be eliminated or significantly reduced by reasonable measures. Where this is not possible, genetic screening may be appropriate in certain circumstances to protect the health and safety of individuals with particular work-related susceptibilities.

32.49 The Inquiry considers that a number of safeguards are necessary for the conduct of this form of genetic screening. In particular, the genetic tests used in employment should be subject to independent oversight by the Human Genetics Commission of Australia (HGCA). The Inquiry recommends that the HGCA establish procedures to assess and make recommendations on whether particular genetic tests should be used in employment for occupational health and safety purposes. The Inquiry believes that the HGCA should take the principles set out by the Nuffield Council on Bioethics and the NRCOHSR into consideration in assessing genetic tests for use in employment.

32.50 The Inquiry also considers that the HGCA and NOHSC, in consultation with other stakeholders, should develop national guidelines for the conduct of genetic screening for susceptibility to work-related conditions. The guidelines should indicate that employers should use genetic tests for screening only where they have been recommended for that purpose by the HGCA in accordance with the procedures outlined above. The guidelines should also address a range of other issues including the use of voluntary and mandatory testing, guidance on the interpretation of test results, appropriate responses to positive test results, the use of family medical history, genetic counselling and privacy.

32.51 In relation to job applicants, the Inquiry considers that screening should be conducted only after an applicant has been offered a position. By minimising the number of individuals subject to screening, this approach would reduce the risks to privacy and the potential for unlawful discrimination based on the results of screening. A more targeted approach would also minimise costs to employers. This recommendation is consistent with Recommendation 31–3, namely, that employers should only request genetic information from job applicants where the information is reasonably required for a purpose that does not involve discrimination.

32.52 Generally, screening should be conducted only on a voluntary basis. Employers should continue to work towards satisfying their duty of care to employees and others by offering voluntary genetic screening programs where appropriate and subject to the safeguards discussed above. However, in those rare circumstances in which it is not possible to eliminate the workplace hazard by taking reasonable measures and the danger to employees is very high, it may be reasonable to implement a mandatory screening program. The Inquiry is of the view that the HGCA should consider and make recommendations on whether mandatory genetic screening can be justified in such circumstances.

32.53 NOHSC should consider adopting the guidelines as a national code of practice so that they become part of the national regulatory framework. In addition, NOHSC should ensure that NPAPs developed under the National Strategy reflect these developments.