Genetic screening for the protection of third party safety

32.68 The third context in which employers might seek access to an applicant or employee’s genetic information is to identify whether he or she has a genetic predisposition to a condition that, if it becomes manifest while the person is at work, could pose a significant risk to the health and safety of other employees or the public. This is more likely to occur in ‘safety-critical’ positions such as public transport (for example, airline and ship pilots and train and bus drivers), emergency services (for example, fire fighters and police officers), and positions involving the storage or transport of dangerous chemicals or products.^[62]

32.69 As discussed above, employers have a statutory duty to protect the health and safety of third persons present at the workplace or otherwise affected by the conduct of operations at the workplace.

32.70 In some industries, specific legislation requires employers to ensure the health and safety of their employees so that they may perform their work without safety risks to other workers or the public. For example, the Rail Safety Act 1993 (NSW) provides that all railway employees performing railway safety work must be of sufficient good health and fitness to perform the functions for which they are certified.^[63]

32.71 Some industries have developed industry-based policies for meeting occupational health and safety requirements. For example, the Civil Aviation Safety Authority Australia (CASA) has the statutory power to regulate the safety of civil aviation operations in Australia.^[64] Pilots must undergo regular medical assessments as a condition of their licence rather than as a condition of employment. If a health risk is identified, the medical examiner must notify CASA and the employee but not the employer.^[65]

32.72 Some employers implement their own workplace policies for the purpose of satisfying their occupational health and safety duties. For example, a number of Australian employers conduct drug and alcohol testing on employees engaged in inherently dangerous work activities to determine whether they are under the influence of a drug likely to affect their performance or place the safety of others at risk.

Issues and problems

32.73 As discussed in Chapter 29, there are some reported cases of employers collecting genetic information from employees to identify potential safety risks to third parties. In the 1970s the United States armed forces and airline industry screened pilots and aircrew applicants for the sickle cell trait in the belief that carriers might suffer adverse health consequences in certain atmospheric conditions. These policies were subsequently discontinued due to insufficient evidence that carriers were at risk.^[66] The United Kingdom Ministry of Defence also conducted sickle cell screening on aircrew applicants until recently.^[67]

32.74 A number of submissions put the view that predictive genetic testing is not yet sufficiently reliable to determine accurately the degree of risk posed by an employee identified with a certain predisposition.^[68] The Disability Discrimination Legal Service submitted:

Until such time as scientific reliability and certainty of genetic test results can be determined and verified, such risk to the public let alone the individual themselves, is unable to be assessed. Given this uncertainty, such testing would constitute a breach of the human rights of individuals and groups within the community with no appreciable benefit to public or individual safety.^[69]

32.75 Several submissions suggested that, instead of collecting genetic information, employers could avoid potential safety risks through alternative measures such as regular medical examinations to identify the onset of symptoms, or by providing technological or other measures to assist employees if safety risks arise.^[70] Dr Paul Henman submitted:

We have not had aircraft and bus crashes or nuclear generator collapses that have resulted from a person’s sudden manifestation of an undiagnosed genetic condition … In terms of safety critical employment, the key issue pertains to the existence of a genetic condition that has a sudden, unexpected onset. In contrast, most (all?) genetic conditions that impair a person’s capabilities are gradual … Safety critical jobs normally have a range of procedures to ensure safety … These checks all make genetic information unnecessary and irrelevant to the operation of safety critical functions. In particular, if a genetic condition may lead to a deterioration of a person’s capacity to work, such deterioration is likely to be identified at a regular medical examination. It is only at such time that it is appropriate for the condition to affect one’s employment.^[71]

32.76 The Australian Nursing Federation recommended a ‘universal precautions’ approach, noting that risk identification, reduction and management processes are routinely undertaken in relation to employees. As examples, it cited the current practice of having more than one pilot in most aeroplanes and the requirement that professional drivers take regular rest breaks.^[72]

32.77 By contrast, the Centre for Law and Genetics submitted that there might be limited circumstances in which genetic screening for the protection of third party safety would be justified:

[T]here would need to [be] some quantification of the risk such that it is reasonable to be taking precautions against it … Amongst other things, there would need to be consideration of the prevalence of the condition and the likelihood of the person actually developing it. The probability of the person developing the condition also has to be weighed against the seriousness of the hazard that this person represents to others should he or she develop the condition: the more serious the consequences for third parties, the more justifiable testing would be.^[73]

32.78 The Anti-Discrimination Board of NSW considered that employers should be permitted to monitor employees’ health in cases where public safety is at issue and there is no way of eliminating the risk without knowledge of a person’s health.^[74]

32.79 The United Kingdom’s House of Commons Science and Technology Committee recommended allowing employers to conduct predictive screening for genetic traits that might put the public at direct and substantial risk. While the Committee stressed that it did not know of any genetic diagnosis that should be revealed to the employer when it released the report, it considered that provision should be made for future advancements in science.^[75]

32.80 A number of submissions commented that, where the safety of third parties is at issue, screening should be done on a mandatory basis.^[76]

Options for reform

Prohibition on use of genetic information

32.81 Currently most predictive genetic tests cannot accurately predict the time of onset of a disease or, in most cases, whether the disease will manifest at all. A notable exception is the monogenic disorder, Huntington’s disease, where the age of onset of the condition depends on the number of repetitions of the DNA sequence ‘CAG’ in one portion of one gene.^[77] On this basis, it might be argued that employers should be prohibited from relying on genetic information to protect third party safety in the employment context. While this approach seems reasonable in the short term, the Inquiry considers that a framework should be established which is more responsive to the developing science relating to genetic screening, having regard to the likelihood that more accurate and reliable genetic tests will become available in future.

Permission to use family medical history

32.82 A second option is to allow employers access to family medical history but not genetic test information to identify whether employees in safety critical positions have a family medical history of certain ‘high-risk’ conditions. While family medical history is relevant in this context, the Inquiry is of the view that this form of screening may not be sufficient to identify all relevant susceptibilities.

Permission to use genetic information subject to limitations

32.83 Several overseas jurisdictions have permitted the use of genetic information in employment for the purpose of protecting third party safety. A number of submissions supported the use of genetic screening for this purpose.

32.84 The Centre for Law and Genetics submitted that this form of screening should be permitted only in exceptional circumstances where a case can objectively be made that screening is necessary for the protection of other employees or the public generally. It recommended a number of procedural safeguards, including the need to demonstrate clear scientific evidence of the risk to third parties; that the danger could not be guarded against by less invasive means such as regular performance monitoring; quantification of the risk so that it is reasonable to take precautions against it; evidence as to the probability of the person developing the condition; and oversight by an independent body.^[78]

32.85 The Anti-Discrimination Board of NSW also recognised that there may be limited circumstances in which genetic testing may be appropriate where particular positions involve significant safety risks to the public, the employee concerned, or other employees. The Board submitted that genetic testing of applicants or employees should be limited to

positions where the risk to public safety could not be eliminated other than by being aware of a person’s condition or predisposition; and conditions which would [affect] a person’s capacity to carry out the inherent requirements of the particular job.^[79]

32.86 The Haemophilia Foundation Victoria submitted that the only circumstance in which tests should be available in employment is where there is a proven link between the particular genetic condition and the ability to conduct the job safely.

For example, if a person’s genetic information shows that they are likely to have a heart attack, and they are at a high-risk age, that person should not fly planes, drive buses or undertake any job in which a sudden heart attack would put the public, or fellow workers, at risk.^[80]

Inquiry’s views

32.87 The Inquiry is of the view that in restricted circumstances it is reasonable for employers to obtain and use genetic information from individuals working in safety-critical positions to identify relevant risks to third parties.

32.88 At present, it is difficult to find plausible examples of genetic conditions that involve the sudden and unpredictable onset of symptoms that could not have been identified through regular medical examinations. A possible example is the testing of airline pilots or bus drivers for Huntington’s disease due to the risk of the sudden onset of irrational behaviour, which is one of the first symptoms of the condition;^[81] or for Marfan syndrome, which is difficult to diagnose but may lead to sudden heart failure.

32.89 The Inquiry considers that in the vast majority of cases regular performance monitoring and medical examinations offer a more effective and reliable means of identifying employees who might pose a risk to third party safety. These assessments can identify deterioration of performance or development of symptoms, whether resulting from genetic or other causes.^[82] Therefore, genetic information from an applicant or employee should not be collected and used for the protection of third party safety if the danger can be eliminated or significantly reduced by other reasonable measures taken by the employer. Where this is not possible, genetic information should be collected and used only where the applicant or employee’s condition poses a real risk of serious danger to the health or safety of third parties and there is a scientifically reliable method of screening for the condition.

32.90 More accurate and extensive genetic testing is likely to become available in future and the Inquiry believes that the use of this information should be expressly addressed in guidelines. On this basis, the Inquiry recommends that the HGCA and NOHSC should collaborate with other stakeholders to develop national guidelines on the collection and use of genetic information from job applicants and employees for the protection of third party safety. In developing national guidelines, the HGCA and NOHSC should consider in what circumstances, if any, testing should be mandatory.

32.91 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.