25 November 2009
The second part of the US Genetic Information Nondiscrimination Act (GINA) has now been enacted (see information for researchers and health professionals); Title II, which prohibits genetic discrimination in employment, came into effect on November 21 2009; Title I, which relates to individual health insurance came into effect on May 21 2009, and the final element relating to group health insurance policies will follow soon. The employment provisions apply only to employers with more than 15 workers.
GINA prohibits discrimination in these areas on the basis of genetic information (see previous news); of note, employers and health insurance providers will not only be prohibited from requesting or using genetic test results, or information about requests for or access to genetics services, but also information about family history of disease. This is a major departure because family history has long been used by insurers as an important factor in calculating the risk of disease (or other outcomes) in an individual, and determining the premiums they should pay for coverage on this basis. With the exception of diagnostic tests for highly penetrant genetic disorders, tests for individual genetic variants associated with susceptibility to disease are generally much weaker predictors of risk than family history.
Interestingly, the level of support for GINA suggests that this actuarial fairness model for insurance is deemed by many to be unsatisfactory. This may mean that there is a general preference for the alternative social solidarity model – whereby there is universal access to insurance and the total cost of provision is shared by all as opposed to weighted towards those at greatest risk – which is perhaps surprising in the light of opposition to President Obama’s controversial healthcare reform Bill, which seeks to ensure that affordable health insurance is available to all including people with pre-existing medical conditions (see BBC news). This could be an example of collective genetic exceptionalism, whereby genetic information is afforded special protection compared with other forms of confidential medical data.
It has reportedly been common practice in the past for employers in the US (who typically provide health insurance coverage for employees) to request family history information from their workers, for example providing incentives to complete medical information questionnaires (see New York Times article). However, employers may accidentally learn of genetic or family history information – for example, overhearing employees discuss family illness - without penalty. Indeed, how they could avoid this is not clear. In 2001 a US company was prosecuted for secretly testing workers for a genetic variant potentially associated with increased risk of carpal tunnel syndrome (see LA Times article) but there is otherwise little evidence of genetic discrimination by employers, despite concerns. Opponents have said that GINA may actually have a negative impact on the health of employees, for example by limiting access to health-promotion or disease management programmes.