In November, the UK Forum for Genetics and Insurance (UKFGI) published a report which it commissioned from Professor Sandy Raeburn and myself which suggested possible options for improving the genetics moratorium.
We hope that this report will prove useful to the House of Lords Committee, the Government and other interested parties.
The UKFGI is an independent body aiming to encourage interdisciplinary discussions about genetic risk to seek solutions to the differing anxieties of the public, of genetic specialists, of ethicists and of the insurance industry to the dilemmas posed by the implementation of genetic testing and screening and of genomic medicine.
One of the recommendations seeks a solution to the ‘test now, buy later’ issue. Two issues have prevented progress. The first is an ethical one. From a patient’s and clinician’s point of view it is unfair that a person who doesn’t need insurance at the time of taking a test, for example because they are young, might find that, when they do, the moratorium will have ended and the test will be taken into account.
On the other hand, if the moratorium had ended, people taking a test after it ended might be worse off than those who took a test during it – if the latter were given special rights. This is a common situation when public policy changes. Typically it can be resolved by having transitional arrangements in place for a reasonable time for those who wish to take advantage of the situation as it was before the change.
The objection to this has been that as the moratorium continues the numbers of people who would need to be covered by transitional arrangements would grow ever larger and so it would be too great a ‘hostage to fortune’. But is this really true? In fact, we suspect that the number will grow but will then reach an equilibrium when the number of people who are tested, but do not yet want to buy insurance, are balanced by those who either develop symptoms (or not) of the disease or whose financial circumstances become clear – such that they have bought it or don’t want it.
Actuarial modelling should take place to establish the numbers of people who could benefit from transitional arrangements and for how long. The aim would be to build a model to assess the impact of the equilibrium numbers on potential insurance premiums and costs, as well as what happens before equilibrium is reached.
There are a number of other recommendations including a re-examination of the ethical implications of different forms of predictive tests and in particular that these may be different for single gene disorders and multi-factorial conditions and investigation into how a specialist insurance system might operate for people at risk of developing rare single gene disorders in the event of the end of the moratorium. The alternative would be innovation by individual companies – as was the case for insuring people with HIV.
Ideally, the end result would be a permanent solution and stability – removing the need for the current cycles of reviewing the moratorium. This would bring confidence to consumers and clinicians and ‘future proofing’ for insurers and re-insurers.
Richard Walsh is a director and fellow of SAMI Consulting www.samiconsulting.co.uk
