Insurers over-simplify genetics, for example in their failure to distinguish familial from other forms of Alzheimer's Disease. Fair discrimination is part of private insurance, but genetic discrimination is unfair and against the private and public good. Policy must be socially sustainable the present policy impacts on individual's behaviour and will adversely affect health care and research. The insurance industry accepts controls over discrimination in other areas such as race. Evidence from US is that patients are giving false names to avoid test results being placed on their medical records.
Research relies on altruistic participation.
Families would be less keen if resulting information were to be used to discriminate against them. The GAIC process is narrow and has some flaws. There is concern about perceived conflicts of interest. There is no published evidence about industry compliance with the ABI Code of Practice, despite requests. Allowing the use of genetic test results would have major costs for a few and little gain for other policyholders.