Concern about the use of genetic information by the insurance industry was one of the main factors leading to the establishment of this Inquiry. The Inquiry has considered the evidence provided in submissions, the role of insurance in the Australian community and alternative models regarding the use of genetic information in underwriting personal insurance, such as those developed in some European countries.
The Inquiry concludes that the evidence does not support a departure at this time from the fundamental principle that has long governed the voluntary, mutually rated, personal insurance market—namely, equality of information between the applicant and the insurer. However, the Inquiry does recommend a range of reforms that target specific concerns about how insurers use genetic information, and how persons who have received an adverse underwriting decision may seek to have this reviewed.
Chapter 25 describes the framework for insurance in Australia, including key insurance concepts and the differences between various types of insurance products—particularly the difference between mutually rated and community rated insurance. Most concerns raised in submissions related to mutually rated insurance and the use of genetic information by insurers to calculate risk. The chapter also examines the exchange of information between applicants and insurers; the type and amount of genetic information currently collected by insurers; and industry policy in this area, especially the Genetic Testing Policy developed by the Investment and Financial Services Association (IFSA), the peak body of life insurers.
Chapters 26 and 27 deal with the substance of the concerns raised in submissions. The recommendations in these chapters proceed on the basis that parity of information between the applicant and the insurer is necessary in a voluntary mutually rated insurance market. Anti-discrimination legislation throughout Australia recognises that it is necessary for mutually rated insurance to differentiate among individuals on the basis of certain characteristics. The DDA, for example, includes a specific exception for discrimination in insurance where the conduct is based upon reasonable actuarial or statistical data, or is otherwise reasonable.
The Inquiry makes a number of recommendations aimed at promoting fair underwriting practices to maintain public confidence in the use of genetic information by insurers. For example, the Inquiry recommends that: the HGCA be given the specific role of making recommendations about the use of particular genetic tests for underwriting purposes; insurers be obliged to provide applicants with clear and meaningful reasons for unfavourable underwriting decisions based on genetic information; and the industry’s review and appeal mechanisms for adverse underwriting decisions be expanded and improved. The HGCA is also assigned a general ‘watching brief’ over insurance industry use of genetic information, including family medical history.
Chapter 28 examines the privacy protection afforded to genetic information in the insurance context. Although the insurance industry holds large quantities of sensitive personal information, including health information, submissions reflected a reasonable degree of satisfaction with the industry’s practices in relation to information privacy. Insurers are now covered by the private sector provisions of the Privacy Act and are obliged to comply with the National Privacy Principles (NPPs) in the handling of all personal information that they collect and hold.
The Inquiry considered the impact of various insurance industry practices on the nature and quality of the consent to provide genetic information in an application for insurance. It is recommended that insurers review their consent and medical authority forms to ensure that they contain sufficient information about the collection, use and disclosure of genetic information to allow applicants to make informed decisions. The Inquiry also recommends that insurers do not ‘bundle’ requests for consent to collect genetic information for the purpose of assessing insurance applications together with consent for other purposes.
Chapter 28 also considers the practice of collecting of family medical history from insurance applicants without the knowledge or consent of the genetic relatives to whom the information relates. It is recommended that the industry apply for a PID under the Privacy Act to confirm the legitimacy of this practice.
Part H: Employment
Part H deals with genetic testing and information in employment. Chapter 29 discusses the types of genetic information that might be relevant in this context, and the legal and ethical issues involved in the potential use of such information. There is little evidence that Australian employers are currently seeking access to genetic information about job applicants or employees, although there is some evidence of this occurring overseas. However, other forms of workplace testing (such as drug and alcohol testing, and psychometric testing) that were unknown some years ago are now becoming relatively commonplace. There is little doubt that the pressures to use genetic information will increase as the reliability and availability of genetic tests increases, and as the cost of testing decreases.
Chapter 30 describes the existing regulatory framework governing discrimination in employment and considers its application in relation to employers’ requests for, or use of, genetic information. The Inquiry considers that there are sound reasons of public policy for making a strong intervention into the use of genetic information by employers, and recommends that, as a general matter, employers should not collect or use genetic information in relation to job applicants or employees. However, the Inquiry acknowledges that there may be rare circumstances where such action may be necessary to protect the health and safety of workers or third parties, and this should be permitted if the action complies with stringent privacy, discrimination and other safeguards, including standards developed by the HGCA and the NOHSC.
Chapter 31 sets out three main concerns regarding the existing anti-discrimination framework. The first concern is the scope of the ‘inherent requirements’ of the job exemption in the DDA and other legislation. The Inquiry recommends that the assessment of an applicant or employee’s ability to perform the inherent requirements of a job should not include an assessment of whether the applicant or employee will be unable to perform the inherent requirements in the future by reason of his or her genetic status, unless it is reasonable to do so in the exceptional circumstances of the particular case.
The second concern relates to the current absence of effective restraints upon the ability of employers to request genetic information from employees. The Inquiry recommends that such requests should be unlawful, except where such information is reasonably required for a purpose that does not involve discrimination—such as to ensure that a person is able to perform the inherent requirements of the job.
The third concern relates to the need for guidance in relation to the use of genetic information by employers, to ensure that test results are interpreted accurately and that employers do not use genetic information inappropriately. The Inquiry recommends that the Human Rights and Equal Opportunity Commission, in consultation with the HGCA and other stakeholders, develop guidelines to deal specifically with the collection and use of genetic information in employment. The Attorney-General also should consider the development of Disability Standards in this area.
Chapter 32 discusses employers’ duties regarding occupational health and safety, and considers each of the ways in which genetic screening or monitoring could be used in this context. Briefly, employers might seek to conduct genetic testing to screen for work-related susceptibilities, to monitor workplace-induced conditions, or to screen for the purpose of protecting the safety of third parties.
Strong concerns were expressed about the potential use of genetic screening programs by employers, in particular the worry that employers might use such screening or monitoring to exclude ‘high risk’ individuals rather than taking all reasonably practicable steps to remove hazardous substances from the workplace. It was suggested that employers have economic incentives to transfer their responsibility for workplace safety onto their employees, and would do so in this way.
The Inquiry is sensitive to these concerns but also recognises the potentially beneficial use of genetic information to protect employees against the onset of serious medical conditions to which they have a particular susceptibility, or for which they exhibit early signs of development. There is also a need to take steps to protect third parties from unreasonable risks to their health and safety, especially in areas involving inherent dangers, such as public transport or the storage or transport of dangerous chemicals.
Accordingly, the Inquiry recommends that employers should be able to collect and use genetic information in limited circumstances, for example, where this is directly relevant to the discharge of their obligations to protect employees and third parties from serious dangers to their health or safety. This only would be available where: the employer already has taken all reasonable steps to eliminate the environmental hazard from the workplace; there is clear evidence of a connection between the working environment and onset of a genetic condition; and there is a scientifically reliable method of screening for the condition. To this end, the Inquiry also recommends that the HGCA and NOHSC develop national guidelines and codes of practice to govern the use of genetic information in the workplace, and that the HGCA provide specific advice about which tests are effective for use in these circumstances.
Chapter 33 discusses the potential use of genetic information in the context of a workers’ compensation claim, or a common law claim arising out of work-related injury or death. The Inquiry outlines the reasons that employers might seek to obtain an applicant or employee’s family medical history or genetic test results in this context. The Inquiry recommends that the HGCA should develop a policy regarding the appro-priate use of genetic information in the assessment of workers’ compensation claims.
Chapter 34 identifies the existing privacy protections applying to genetic information obtained from job applicants and employees in the course of their employment, and notes the existence of the ‘employee records’ exemption in the Privacy Act. There appears to be no reasonable basis for the fact that the health information of public sector employees is protected but the health information of private sector employees is not. The Inquiry concludes that the employee records exemption is too broad and recommends amendment of the Privacy Act so that genetic information held by private sector employers about their employees is given the same high level of privacy protection afforded to the same information when held, for example, by health service providers or insurers.