1- Genetic discrimination should be taken seriously as an issue, and requires increased leadership from Government
2- Policy should be moratorium-based at first, moving into legislation following further research
3- Genetic discrimination should be:
- Banned in employment (except in cases where safety is at risk), non-healthcare insurance (such as travel and mortgages), and allocation of education and healthcare
- Allowed proportionally in healthcare insurance
- Allowed sometimes to increase employee and public safety
The potential of genetic science to improve health care is enormous, and policy must first aim to promote therapeutic benefits. This may only happen if people are confident that genetic testing for therapeutic benefits will not harm them in other ways, such as through decreased chance of employment or education.
Definition of Genetic Discrimination in New Zealand Law
It must be considered which definition of genetic discrimination should be included in policy. Despite the ongoing debates discussed earlier, a clear definition is essential for good policy development. The definition suggested is genetic discrimination is when distinctions are made on the basis of a persons real or supposed genotype, determined through any means. This definition uses the type of information as the distinguishing feature, rather than the method it was obtained through. Using genetic testing as the rule would probably be simpler, but would be somewhat arbitrary. This definition does not include phenotype-based discrimination, as this is usually based on non-genetic testing. It also includes non-disease conditions such as personality, as excluding these is a completely arbitrary distinction.
Why these recommendations?
Health care in New Zealand, as in the UK and Australia, is provided predominantly through the Government. Thus, private healthcare insurance is not as important as in countries such as the USA, where it is the primary means of healthcare allocation.[1] However, the healthcare insurance industry still provides a vital service, with 32.3% of New Zealanders opting to have some kind of private insurance.[2] The protection of this industry against the possible effects of adverse selection must be weighed against the possible exclusion of people from the service on the basis of genetics.
Access to many social goods, including travel and housing, is based on access to insurance. The right to work is recognised as an essential human right in New Zealand. Although there is an extensive social welfare net for the unemployed, it is based on moving people into paid work as quickly as possible. To impede access to travel, housing, employment, and other goods due to genetic discrimination is likely to seem very unfair to many New Zealanders. The small amount of research previously conducted backs this up.[3] Allocation of healthcare and education on such a basis is likely to be even less acceptable to New Zealanders.
This dislike of such discrimination is likely to stem from two sources- the idea of fairness, whereby everyone is given a ‘fair go’, and the possible arbitrary nature of some discrimination.[4] Genetic testing can currently provide very few direct links between genotype and inability to perform certain tasks, and many fear that discriminatory decisions will be based on vague personality traits and supposition. More complex issues of genetic discrimination involve public safety and employee safety. These cases involve a potential increase in safety if judicious genetic discrimination is used. This type of discrimination could conceivably be acceptable, but only if based on solid evidence and not wild speculation.
Full access to social goods such as healthcare, employment, travel, housing, and education must be maintained. This is likely to require limiting genetic discrimination. Personal healthcare insurance and issues of public and employee safety may be areas where genetic discrimination could be allowed in some circumstances. However developments in genetic science and changes in public opinion could very easily alter these ideas.
New Zealand policy should initially take the form of a moratorium. This relatively quick action will allow a wide research program to be conducted, and for attitudes towards discrimination to better understood. However it may not be completely effective given the flexible and incomplete nature of moratoriums. Work should be carried out to transform policy into legislation, creating a relatively permanent and durable institution complete with enforcement mechanisms. Given the potential fluidity of the situation, flexibility must be built into any legislation. Such flexibility could come from a review panel to continually assess advancements in science or manage regulatory decisions around ‘acceptable’ discrimination.
Policy should aim to limit genetic discrimination in most areas, while allowing it only where clear benefits are available. Genetic discrimination in the provision or allocation of employment (except in cases where safety is at risk), non-healthcare insurance (such as for travel and mortgages), education, and healthcare must be completely banned. This is essential to fulfil New Zealand and international anti-discrimination norms. It is unlikely the insurance industry will suffer from adverse selection as people with all risk levels wish to travel and buy housing. If adverse selection is proven conclusively through data, serious consideration should be given to state-provided insurance.
New Zealand does not necessarily need to prevent discrimination in healthcare insurance because of the public healthcare system. However, discrimination should be limited to the extent that insurance companies must be protected against adverse selection. A proportional system, similar to that of the UK where only high levels of coverage available could be subject to discrimination, is recommended. This is provisional on continued public provision of healthcare. Allowable discrimination should also be based on scientific proof, where a New Zealand Government body has allowed a specific test. This also follows the UK model.
Genetic discrimination, where relevant to public and employee safety, should be allowed on a severely limited basis. Only where there is an unambiguous link between discrimination against a specific genotype and an increase in safety, should discrimination be allowed. As in the case of healthcare insurance, a New Zealand Government body should be set up to consider each test specifically, and allow only those that meet stated criteria.
[1] Greely, “Genotype Discrimination: The Complex Case for Some Legislative Protection,” 1488.
[2] Health Funds Association of New Zealand, “Health Insurance Market Remains Steady.” (Health Funds Association of New Zealand, August 4, 2009)
[3] Molina, “Genetic Privacy: Issues in Aotearoa/New Zealand.”
[4] Human Rights Commission, “Human Rights in New Zealand Today.”