GENEWATCH
 
GENETIC DISCRIMINATION: AUSTRALIAN EXPERIENCES AND POLICIES
By Kristine Barlow-Stewart
 

From the start of the Human Genome Project, and continuing in the post-mapping era, the ethical, legal and social issues associated with knowledge of a person's genetic information have been highlighted. In particular, there has been widespread international concern about the potential for differential treatment of healthy asymptomatic individuals based solely on their genetic makeup predicted from genetic testing or inferred from their family history. Most concern has been raised about this concept of 'genetic discrimination'[i] in commercial settings such as insurance and employment, unsurprising given the commercial value of predictive test information to such third parties.

In Australia in 2000, the announcement of findings of a study by Barlow-Stewart and Keays[ii] that had identified 48 anonymously reported cases of genetic discrimination, in areas that included life insurance and employment, attracted significant media coverage. This was the impetus for the Australian Federal Government to request the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) to conduct a comprehensive inquiry into the Protection of Human Genetic Information.[iii] The Terms of Reference governing the 2001-2003 Inquiry were to recommend, in relation to human genetic information - and the samples from which the information is derived - how to best protect privacy interests, protect against unfair discrimination and ensure the highest ethical standards. The Final Report, Essentially Yours (2003)[iii] contained 144 recommendations directed at 31 bodies (government, regulators, educators, health professionals, insurers, employers and others) and covered the use of genetic information in a myriad of areas including risk-rated insurance, employment, identity testing and forensics and sport. Dr. Francis Collins declared the Report "a truly phenomenal job ... placing Australia ahead of what the rest of the world is doing."  The Australian Government accepted the majority of the recommendations and implementation is proceeding; the National Health and Medical Research Council through its Human Genetics Advisory Committee were referred the areas of health, research and risk-rated insurance.

Genetic information and risk-rated insurance

In Australia, there is a national health system and private health insurance is not risk-rated. Therefore concerns regarding the potential for genetic discrimination are directed at the life insurance industry. The Disability Discrimination Act 1992 (Cth)[iv] [v] [vi] acknowledges the commercial nature of life insurance as a form of voluntary mutually rated life insurance which of its nature involves differentiating between applicants on the basis of their health status and family histories of health problems. Therefore, life insurers in Australia are legally able to 'discriminate' between people on the basis of their future health risks when making underwriting decision for life insurance products that include death cover, trauma and income protection, and long term care insurance.  Insurers are not in breach of the Act if their actions are based on sound actuarial or other statistical data; thus the use of genetic information, whether obtained from genetic test results or reports of the health and causes of death of close family members, is not unfair discrimination under the Act when used in this way. The recommendation of the ALRC/AHEC supported this concept that genetic information is no different to any other information for insurance purposes; that is, the general law on insurance contracts requires mutual disclosure in good faith of all relevant material and information that would help in risk assessment.

A cooperative approach, rather than a legislative one, has been taken in Australia in regard to genetic information and risk-rated insurance. The insurance industry has been very proactive in the use of genetic test results in underwriting by developing a policy, in 2000, that no insurer will require an applicant or insured person to have a DNA test.[vii]  However, if a consumer has had a genetic test, or knows the results of relatives' genetic tests, they must declare them when applying for a new policy or changing an existing one. Once a policy is taken out and payments are maintained, it is described as 'guaranteed renewable': no further information, such as the results of a genetic test, needs to be provided to the insurer.[viii] Nevertheless, the ALRC/AHEC Report identified some issues that remained to be addressed to ensure that inappropriate use of genetic information does not occur within the industry. These include the continuing education of agents in the insurance industry to avoid inappropriate discriminatory use of the information; a clear understanding by customers of the mechanism to lodge complaints if it is felt that inappropriate decisions have been made; ensuring rigorous actuarial assessment of the applicability of a DNA test in the insurance setting; and existence of application and information sheets written in plain English so that applicants understand exactly what is required of them.

The need for these issues to be addressed has been underscored by data generated from the

recently completed five-year Genetic Discrimination Project (GDP) [ix] [x] which provides the first empirical evidence of the existence of genetic discrimination in the life-insurance sector[xi]. The GDP also verified that some people do not undergo genetic testing that could be beneficial for their future health because they fear that the results could jeopardize their own or their relatives' access to life insurance. While the numbers of verified consumer-reported incidents were small, it is clear that a procedure needs to be set in place to ensure that genetic tests are used appropriately and underwriting is on the basis of actuarial data, requiring input from insurance industry bodies working with experts in genetics. The GDP could not have been completed without the support and co-operation of the Australian life insurance industry and it is hoped that further reforms will be generated on the continued basis of this cooperation.

It will also be essential for insurers to address the potential impact of their requirements for full disclosure of genetic test information on the recruitment of volunteers in genetics research projects. The consent process needs to make it clear that if their test results will be provided to volunteers as part of their involvement in the research, they will have to declare the results in their insurance application or when changing their insurance policy, despite potential adverse effects.  It is also important to note that research participants who are not given test results are under no obligation to disclose their involvement in the research project.

Genetic information and employment

The ALRC/AHEC recommendations, accepted by the government, covered the use of genetic information (Ch 29) in employment-based health screening, health surveillance and other health assessments, including those for occupational health and safety.[iii] Given that there is no linkage between employment and health insurance in Australia, the issue is the balance between the interests of employers, employees and the public and the inappropriate use of genetic information in the workplace.  In the occupational health and safety setting, there is the potential to use genetic information to identify persons who are susceptible to workplace hazards, or who pose a risk to themselves or others as a result of possible future onset of a genetic disease and to monitor employees' health over time where there is industrial exposure to, for example, toxic chemicals or radiation. However, concern has also been expressed about other drivers for its use, including economic factors to limit payouts in the case of workplace injury and liability. In one of the cases verified by the GDP, in a workers' compensation claim of a woman who had injured her back at work, the tribunal adjudicating the case requested that her claim be subject to having a predictive genetic test to prove that she had not inherited the faulty gene for Huntington disease, of which she had a family history. This was based on the erroneous view that her fall may have been due to the first signs of the condition, and so was an inappropriate and discriminatory request, denying her the right to make an autonomous choice whether to know her genetic makeup in regard to this late onset and untreatable neurological condition.

Despite this case, the GDP study found that there is currently no evidence of systematic use of genetic testing or other genetic information by Australian employers for screening or monitoring purposes, confirming the conclusions of the ALRC/AHEC Report.[xii]  Although there was little evidence of Australian employers currently using genetic information, it was seen as almost inevitable that, as tests become cheaper and more reliable, employers would seek to make use of such information in the future. The GDP study also confirmed this view, with a number of employers expressing interest in the future use of genetic tests if they became more reliable.

In contrast to policies directed towards the insurance industry, the ALRC/AHEC recommendations advocated changes to legislation that would amount to a general prohibition of the use of genetic information by employers, with very limited exceptions primarily on occupational health and safety grounds. In the exceptions in which a genetic test may be used in the employment setting, there needs to be strong evidence of a clear connection between the working environment and the development of the condition; it must be shown that the condition may seriously endanger the health or safety of the employee; and the test must be a scientifically reliable method of screening for the condition. Moreover, policies would need to be developed governing how the DNA sample is stored and protected against being used for other purposes or the destruction of DNA samples when an employee leaves the organisation.

Again, the Australian Federal Government endorsed the broad thrust of these recommendations,[xiii]  but they have yet to be legislatively implemented.

Seeking redress for genetic discrimination

From the GDP's analysis of cases that came before anti-discrimination tribunals and other relevant bodies in Australia, it is clear that only a relatively small number of cases of genetic discrimination have been taken to tribunals seeking legal redress.[xiv] This view was confirmed by consumers who reported financial and emotional barriers to seeking redress, as well as not knowing where or how to complain.[xv] It is essential therefore to promote and facilitate avenues of complaint and redress when policies or legislation are implemented in order to prevent or limit genetic discrimination.

Conclusion

The empirical evidence of genetic discrimination provided by the work of the GDP has finally put to rest the perception that the phenomenon is a measure of "genetic dread" in society - that it simply reflected community-based fear rather than reality.[xvi]  Life insurance was the main context within which genetic discrimination occurred in the Australian investigation, but this does not discount the possibility of genetic discrimination in health or other risk-rated insurance in other countries. The response made by each country to prevent or minimize the harm associated with the broadening applications of genetic technologies will necessarily be balanced by the economic, legal and ethical concerns within different political systems.[xvii]What is undeniable, however, is that such policies and/or legislation must be put into place to maximize the benefits to society generated by developments in this dynamic field of genetic science and medicine.


Kristine Barlow-Stewart, Ph.D., is Director of The Centre for Genetics Education at Royal North Shore Hospital in Sydney, Australia, and Clinical Associate Professor in the Faculty of Medicine at the University of Sydney.


Endnotes

[i] Taylor SD. Otlowski MF, Barlow-Stewart KK, Stranger M, Chenoweth K.,  'Investigating genetic discrimination in Australia: opportunities and challenges in the early stages' (2004) 23(2) New Genetics and Society 225.

[ii] Barlow-Stewart K. & Keays D., 'Genetic discrimination in Australia' (2001) 8 Journal of Law & Medicine 250.

[iii] Australian Law Reform Commission & Australian Health Ethics Committee of the National Health & Medical Research Council NHMRC (ALRC/AHEC) Essentially Yours: The Protection of Human Genetic Information in Australia (2003).

[iv]  Disability Discrimination Act (Cth) s 46.

[v] M. Otlowski, Implications of Genetic Testing for Australian Insurance Law and Practice, (2001) Centre for Law and Genetics, Occasional Paper No. 1 

[vi] M. Otlowski, 'Resolving the Conundrum: Should Insurers be Entitled to Access Genetic Test Information?' (2000) 11 Insurance Law Journal 193-215.

[vii] Investment and Financial Services Association (IFSA), Standard No 11.00 Genetic Testing, cll 10.1 and 10.3. Because of the potentially anti-competitive effect of this policy, authorisation for the Standard had to be obtained from the Australian Competition and Consumer Commission (ACCC) in 2002 and re-authorised in 2006. http://www.ifsa.com.au/documents/IFSA%20Standard%20No%2011.pdf

[viii] Life insurance contracts that are guaranteed renewable are to be contrasted with those general insurance products which involve a fresh assessment on each renewal and full disclosure obligations at the time of that assessment. If an increase in cover is sought under an existing guaranteed renewable policy, however, a fresh obligation to make disclosure arises at the time of that application.

[ix] M. Otlowski, S. Taylor and K. Barlow-Stewart, 'Major Study Commencing into Genetic Discrimination in Australia' (2002) 10 Journal of Law and Medicine 41-48. See also the project website: www.gdproject.org.

[x] Taylor S, Treloar S, Barlow-Stewart K, et al. Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients Regarding Coercion to Test, Insurance and Employment  Aust J Emerg Techn Soc 2007;5:63, available at <www.swinburne.edu.au/ajets>

[xi] Barlow-Stewart KK, Taylor SD, Treloar SA, Stranger M & Otlowski M 'Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilisation of genetic testing' (2009) 11 (3) Genetics in Medicine 193-201

[xii] Otlowski M, Stranger M, Taylor S. et al, Practices and attitudes of Australian employers in relation to the use of genetic information: report of a national study. (2009) Comp Labor Law Policy J In press.

[xiii] Commonwealth Attorney General's Department, Australian Law Reform Commission and Australian Health Ethics Committee Report, Essentially yours: The protection of human genetic information in Australia: Government response to recommendations, Canberra, Commonwealth of Australia (2005).

[xiv] Otlowski MF, Taylor SD, Barlow-Stewart KK, Stranger M, Treloar SA, 'The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study' (2007b) 9 International Journal of Discrimination 3

[xv] Taylor SD, Treloar SA, Barlow-Stewart KK, et al. Investigating perceptions and experiences of genetic discrimination I: A large-scale survey of clinical genetic service consumers in Australia. Clinical Genetics (2008) 74 Clin Genet 20-30.

[xvi] Wertz, DC, Genetic discrimination - an overblown fear? (2002)  297 Nat Rev Genet 196-197

[xvii] Rothstein M, Knoppers B. Legal aspects of genetics, work and insurance in North America and Europe. 1996 3 Eur J Health Law 143-61

 
 
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