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Australian Law Reform Commission - Reform Journal |
Reform Issue 81 Spring 2002
This article appeared on pages 69 – 73 of the original journal.
Genetic discrimination in insurance & employment – science fiction or fact?
By Carolyn Adams*
“Officially they are called ‘In-valids’ ... They are the ‘healthy ill’. They don’t actually have anything yet – they may never have. But since few of the pre-conditions can be cured or reversed, it is easier to treat them as if they were already sick.’1
The film Gattaca was released in 1997. The protagonist, Vincent Freeman, lives in a ‘not-too-distant’ future in which an individual’s genes largely dictate his or her place in society. Vincent, a child conceived without the benefit of pre-implantation genetic screening, has a genetic profile that includes a 99% probability of a heart disorder with a resulting life expectancy of 33 years. As a result, Vincent’s employment prospects are severely limited. While he dreams of going into space as an astronaut with the Gattaca Aerospace Corporation, his genetic resumé only qualifies him for work as a cleaner at Gattaca.
Why should anybody invest all that money to train me, when there are a thousand other applicants with a far cleaner profile? Of course, it’s illegal to discriminate – ‘genoism’ it’s called – but no one takes the laws seriously.2
The Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) are currently inquiring into the need to regulate the use of human genetic information. The Government’s decision to opt for a joint inquiry reflects the wide array of legal and ethical concerns arising in this new field. AHEC is a principal committee of the National Health and Medical Research Council (NHMRC). It advises the NHMRC on ethical issues relating to health, and is also responsible for developing guidelines for the conduct of medical research involving humans.
The joint Inquiry is examining a wide range of issues including whether existing laws dealing with privacy and discrimination in Australia are adequate to protect people in a number of sectors such as employment, insurance, health and law enforcement. These and other issues are discussed in detail in the recently released Discussion Paper, Protection of Human Genetic Information (DP 66).
The thirty-nine chapters of the Discussion Paper examine a large number of issues in relation to the use of human genetic information and include over 100 proposals for reform and almost 40 questions for further consideration. One of the central proposals is the establishment of an independent standing advisory body – the Human Genetics Commission of Australia (HGCA) – following the lead of the United Kingdom and Canada in this regard. The principal role of the HGCA would be to provide on-going, high-level technical advice to Australian governments about existing and emerging issues in human genetics, and the ethical, legal and social implications arising from these developments.
The film Gattaca accurately identified employment as one of the areas in which the use of genetic information may have powerful consequences for individuals. Submissions to the Inquiry identified both employment and insurance as particular areas of concern. Some of the issues and problems that may arise in these two contexts are considered further below.
Insurance
The purpose of insurance is risk distribution – to spread risk across a pool of individuals by means of a contract between the insurer and the insured, which is embodied in an insurance policy. In law, this contract is said to be one of ‘utmost good faith’. The applicant has a duty of disclosure at common law3 or under legislation, depending on what type of insurance is required. Section 21 of the Insurance Contracts Act 1984 (Cth) imposes a duty to disclose to the insurer all information that is known, or which reasonably ought to be known, to be relevant to the insurer. This information is used in the process of underwriting, in which the insurer assesses the particular risk that the applicant will bring to the pool, decides whether to accept the risk and, if so, on what terms.
Insurance in Australia is commonly divided into three categories: life, health and general insurance. Life insurance includes a variety of products including policies that provide payment upon death or continuous disability. Health insurance provides payment for the provision of hospital and other medical and health services. General insurance covers matters not attached to either life or health insurance, such as income protection, travel, professional indemnity, home, contents and car insurance.
The insurance industry currently makes use of some genetic information in underwriting. Genetic information may be relevant to certain personal, risk rated insurance products that are based on an assessment of an applicant’s health status, such as life insurance and income protection insurance. The same issues do not arise in relation to private health insurance in Australia, which is not risk rated.
In order to assess an application for personal risk rated insurance, insurers often ask for information about an applicant’s family medical history – a form of genetic information – and for the results of any genetic tests that the applicant has had in the past. In the future, as genetic tests become cheaper and more numerous, and as their relevance becomes better understood, it is likely that the amount of genetic information available for use by insurers will increase.
The differentiation between individuals on the basis of their genetic status for the purpose of insurance constitutes a form of discrimination – that is, it involves treating people differently on account of their genetic status. However, such discriminatory practices are largely exempt from the provisions of Australian anti-discrimination legislation, provided that the decisionmaking process is based on actuarial or statistical data, or is otherwise reasonable. The exemptions recognise that differentiating between individuals is fundamental to the market in risk rated insurance products. This means that, while insurers discriminate between applicants for insurance, that discrimination is not generally unlawful.
In response to its Issues Paper, Protection of Human Genetic Information (IP 26), released in October 2001, the Inquiry received a large number of submissions focussed on the insurance sector. Many of these indicated that, even where underwriting decisions are lawful, the use of genetic information in insurance sometimes leaves applicants with the impression that the decisions are not well-informed or fair.
In addition, some submissions expressed concern about the potential impact on individual and public health outcomes where people are deterred from undergoing genetic testing for health purposes because of the fear that the information may later disadvantage them, or members of their family, in obtaining insurance. The scientific reliability and actuarial relevance of the genetic information currently available for use by insurers were also questioned. Some submissions expressed the fear that the use of genetic information by the insurance industry would lead to the creation of a ‘genetic underclass’, perpetually unable to obtain insurance cover and related benefits – the future as imagined in Gattaca.
Insurers, on the other hand, noted the potential threat to the viability of the voluntary insurance market if applicants were no longer under an obligation to make full disclosure of all relevant information. In these circumstances, insurers would be denied information needed to assess risk accurately. Submissions received from the Insurance Council of Australia (ICA) and the Investment and Financial Services Association (IFSA) indicated that the industry was aware of the sensitivity of this kind of personal health information.
IFSA, for example, has developed a Genetic Testing Policy which prohibits member life insurers from requiring applicants to undergo genetic tests for the purposes of obtaining insurance. The Policy does, however, permit existing genetic test results to be used in underwriting. The Policy includes guidelines in relation to confidentiality and stipulates that the results of a genetic test are only to be used in the assessment of an insurance application in respect of the individual on whom the test was conducted. This is important because genetic test results may also reveal information about the genetic relatives of the person on whom the test was conducted.
As well as considering submissions received, the Inquiry examined the structure and role of voluntary risk rated insurance in Australia, as well as alternative models in use in some European countries. These include two-tier models that allow individuals to purchase insurance up to a specified monetary value without an obligation to disclose genetic test information but once the sum insured exceeds the threshold, full disclosure is required. As a result of this further research and extensive consultations the Inquiry has put forward a series of proposals for reform in DP 66.
The Inquiry’s preliminary view is that current evidence does not support a departure from the fundamental principle that has long governed the voluntary risk rated personal insurance market, that is, equality of information between the applicant and the insurer. Instead, the Inquiry has developed a range of proposals that target specific concerns. The principal proposals include:
• approval by the proposed HGCA of particular genetic tests for use in insurance underwriting;
• imposing an obligation on insurers to provide clear and meaningful reasons for unfavourable underwriting decisions based on genetic information;
• improving review and appeal mechanisms available to applicants who have received unfavourable decisions; and
• monitoring developments overseas and ongoing review of Australian insurance practice by the HGCA.
These proposals are intended to promote more transparent underwriting practices and to maintain public confidence in the use of genetic information by insurers.
Employment
DP 66 also considers the use of genetic testing and information in the employment context – the issue that caused Vincent Freeman so much trouble in Gattaca. While there is little evidence that Australian employers are currently seeking access to genetic information about job applicants or employees, there is some evidence of this overseas. As the reliability and availability of genetic tests increase and the cost of testing decreases, the economic incentives to make use of such information to ensure a healthier workforce, lower overheads and higher levels of productivity will increase. The information is also likely to be relevant to occupational health and safety concerns, for example, employers might seek to conduct genetic testing to screen for work-related susceptibilities or to monitor workplace-induced conditions.
The Inquiry has examined the existing regulatory framework to ensure that it is adequate to protect applicants and employees from misuse of genetic testing and information in the future. The Inquiry has formed the view that employers should be able to collect and use genetic information in relation to job applicants or employees only where this is reasonable and relevant within the terms of anti-discrimination and occupational health and safety legislation.
Discrimination in employment
In examining the existing anti-discrimination framework, three main concerns became evident. The first concern relates to the ‘inherent requirements’ of the job exemption in the Disability Discrimination Act 1992 (Cth) (DDA). Under the DDA it is not unlawful for an employer to discriminate against a person if, because of his or her disability, the person is unable to carry out the ‘inherent requirements’ of the particular job or would, in order to do so, require services or facilities that would impose an unjustifiable hardship on the employer.
A number of submissions to the Inquiry expressed the concern that employers might seek to rely on genetic predispositions – to early onset Alzheimer’s disease for example – to argue that a person may not be able to carry out the inherent requirements of the job at some point in the future. The Inquiry agrees that this is not a legitimate ground upon which to deny a person employment. DP 66 therefore proposes that the inherent requirements exemption should be clarified to ensure that employers are only able to assess a person’s current ability to perform the inherent requirements of a job.
The second concern relates to the lack of effective restraint on employers’ requests for genetic information from employees, including requests for family medical history, the results of past genetic tests and requests to undertake new genetic tests. Irrelevant questions about genetic status are unlikely to contribute to fair recruitment and employment processes. They may also give rise to concerns about the privacy of the information provided as well as the possibility that the information may be misinterpreted or misapplied.
In response, DP 66 proposes that employers should not request genetic information from employees unless they can demonstrate that the information is necessary for a purpose that does not involve discrimination. Such requests for information should be reasonable and relevant to the job in question, for example, where the information is necessary to ensure that a person is able to perform the inherent requirements of the job, or where the information is required by occupational health and safety standards.
The third concern raised in this context is the need for independent oversight of the use of genetic testing and information by employers, to ensure that test results are interpreted accurately and that employers do not use genetic information inappropriately. In response to this concern DP 66 proposes that the Human Rights and Equal Opportunity Commission (HREOC), in consultation with the proposed HGCA and other relevant stakeholders, develop Disability Standards to deal specifically with the collection and use of genetic information in employment. Disability Standards, once tabled before Parliament have the force of law.
Occupational Health and Safety
As noted above, occupational health and safety is one area of employment in which genetic testing and information may become widely used. While there are potential benefits to employees from such use, a number of concerns were highlighted in submissions to the Inquiry.
Concern was expressed that genetic screening or monitoring of employees may result in the exclusion of ‘high risk’ individuals from the workplace. Employers will then be less inclined to take remedial action to improve conditions in the workplace by, for example, eliminating or limiting exposure of all workers to hazardous substances.
Both employers and employees have an interest in promoting occupational health and safety outcomes. The Inquiry is of the view, therefore, that employers should be able to collect and use genetic information in limited circumstances where this is directly relevant to the discharge of their obligations to promote and protect the health and safety of their employees. On this basis, the Discussion Paper proposes that genetic screening or monitoring of employees should be conducted only where:
• there is strong evidence of a clear connection between the working environment and the development of the condition;
• the condition may seriously endanger the health or safety of the applicant or employee; and
• the danger cannot be eliminated or significantly reduced by reasonable measures taken by the employer to reduce the environmental risks.
In order to ensure that such genetic information is collected and used appropriately, DP 66 also proposes that the National Occupational Health and Safety Commission (NOHSC), in consultation with the proposed HGCA, develop model regulations to govern this aspect of workplace genetic testing.
* Carolyn Adams is a Senior Legal Officer with the ALRC working on the Genetic Information Inquiry.
Endnotes
1. From the screenplay of A Niccol, GATTACA (1997), Columbia Pictures.
2. A Niccol, GATTACA (1997), Columbia Pictures.
3. Carter v Boehm (1766) 3 Burr 1905, 1909 (Mansfield LJ).
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