Legislation or Moratorium?
Policy can be implemented in a number of different forms- ranging from the most formal (legislation) to the most informal. Two main forms have been used in international genetic discrimination policy – legislation and moratorium. Used in the US and much of Europe, genetic legislation has faced several issues including long time frames, poor concept definition, and a lack of flexibility.
It is generally a lengthy process to pass laws, even if a consensus exists on the issue. Anti-genetic discrimination legislation took at least eight years to become law in the US, despite widespread political consensus on the need for such a law.[1] Anti-discrimination bills were first introduced in 1999, but could not overcome the political hurdles required until 2008. The Genetic Information Non-discrimination Act (GIN Act) was passed in 2008 and bans genetic discrimination in insurance and employment. It is substantively similar to all the previous unsuccessful bills. This difficult legislative process did provoke public debate in a number of sectors about the potential policy options.
Genetic science is a rapidly developing field, and legislation may sufficiently adaptable. Legislation passed in the 1990’s (such as in Austria and Denmark) is now seen as being poorly developed and increasingly irrelevant. It fails to provide workable definitions of the scientific and technical terms involved. Danish and Austrian legislation has been singled out as being hampered by overly lax or restrictive definitions of discrimination respectively.[2] This is not a problem solely of older legislation however, as French legislation passed in 2003 is noted for its unclear definition.[3]
Flexibility can be built into legislation. The GIN Act provides for future flexibility by setting up the Genetic Non-discrimination Study Commission six years after the Act was initially passed. Its role is to monitor genetic science and the impact of the GIN Act.[4] Given the difficulties in passing this legislation initially, and the long time frame for establishing the committee, it seems unlikely that any changes the Commission recommends will be able to be enacted rapidly enough to maintain pace with the developing science of genetics.
Moratoriums are an agreement to temporarily ban or suspend activities, often to give time for more research and consideration of a specific issue. Most moratoriums are self-imposed or voluntary, and have expiry dates. Moratoriums on genetic discrimination around the world have faced several issues- coverage, durability, and enforcement. New Zealand and the UK currently have moratoriums on discrimination in insurance in place. The moratorium in the UK was a joint measure between the Association of British Insurers (ABI) and the UK Government.[5] It was first implemented in 1997, and has been renewed several times with small changes in detail each time. However not all insurers are in the ABI, so not all are covered by the policy. There is also no enforcement mechanism other than industry standards for ensuring compliance.
Legislation is a lengthy process, and can create fixed but sometimes poorly defined institutions. Moratoriums provide flexibility, but do not necessarily provide the coverage or enforcement mechanisms necessary to ensure full compliance. Moratoriums also appear to only apply to the insurance industry (and not employment). This is possibly because the insurance industry is relatively compact and generally represented by a single dominant body. Employers are far more diffuse, and therefore difficult to form into a consensus.
Ban, restrict, or allow discrimination?
Whatever the form, there are a number of choices to be made in regards to policy content. Some countries have banned all genetic discrimination, regardless of the field or level of harm. Other countries have specified that genetic testing can only be used for therapeutic purposes, thus ensuring the medical potential of testing is utilised fully. In some cases, particularly in respect to international organisations, human rights and non-discrimination norms have been stressed, leading to bans on genetic discrimination. The US, and at least eleven European countries (including France, Austria, Denmark, and the Netherlands) have banned genetic discrimination in either insurance or employment (frequently in both).
A second approach is to restrict the use of genetic discrimination. Some countries have limited the fields in which it can be applied or the monetary value that must be at stake before it can be applied. Others have created a flexible regulatory body that can oversee specific types of genetic discrimination. The UK limits non-discrimination to policies under a certain monetary value, and allows it above the value. Discrimination is only allowed if an independent Government committee has approved the test on the basis of scientific relevancy and actuarial accuracy. The monetary value is set so most policies fall under it, and are not subject to discrimination.
A choice to create no policy could also be made. In this case, genetic information remains an unprotected class, and actions based on it not illegal. The market can then decide how best to proceed. There are countries where no action has been taken, but this is almost always a result of the issue not being considered, or where consideration is still underway.
Recommendations
[1] Meredith Wadman, “Gaps in Genetic Antidiscrimination Law Spur State Action,” Nat Med 15, no. 8 (2009).
[2] Human Rights Commission, “Discussion Paper.” 40.
[3] Human Rights Commission, “Discussion Paper.” 41.
[4] Genetic Information Nondiscrimination Act of 2008, 110-233, 110th Congress.
[5] Association of British Insurers, “ABI Code of Practice for Genetic Tests”, (Association of British Insurers, June 2008), 4.