Harpal Karlcut, chairman of the ABI genetics working party, talks to Peter Madigan about extending the genetic testing moratorium and gene-based breast cancers
Sitting high above London's Docklands in the global headquarters of HSBC, Harpal Karlcut grins when he is asked why he was selected to chair the Association of British Insurer's (ABI) genetics working party.
"I actually knew very little about genetic testing before I became chairman," he admits. "I think part of the reason the ABI approached me for the role is because there are a number of genetic experts on the committee and there was a need for the chair to ensure there is a balanced debate and that all views were represented."
Dynamic
The road that has taken Karlcut to the chairmanship of arguably the most dynamic of all the ABI committees has been relatively straightforward. Since he joined HSBC 14 years ago he has held a variety of roles in the life and health divisions before assuming his current role as head of life and pensions. In addition, he has been actively involved with the ABI for several years, having sat on the income protection and critical illness working parties before becoming chairman of the genetics committee.
"The party was formed in late 1997 and I have been the chairman for the last two years. My job is to ensure that we deliver on the commitments we have and that we make progress on the matters that are of high interest to the government and the wider public," he reveals.
Genetics is an area that provokes a high degree of public interest and the committee's recent work has not gone unnoticed. In March 2005 the party reached agreement with the Government on a proposal to extend the existing moratorium on using predictive genetic test results for insurance applications for a further five years, until 2011. The extension was the culmination of a process that took well over a year.
"There are two extreme opposites to the moratorium. One is that there will become a time where genetic tests are accepted by the public and the Government as another piece of medical information which is taken into account during underwriting. The other extreme is a ban on genetic testing in setting premium rates except in some extreme cases. Both of these could happen but we are not in a position to favour either of them," says Karlcut.
The moratorium represents a compromise, but Karlcut dismisses the suggestion that it is a deferral from taking a firm stance on genetics.
"To say we are deferring suggests there is a solution that we know about, but we are simply not there yet. Given where we are, the moratorium is a very pragmatic solution and not a deferral at all."
In the genetics working party's nine-year history one condition, Huntington's disease, has been approved to have predictive genetic tests taken into account by insurers. The disease is unique in the lack of environmental influences in its development.
With the moratorium agreed, the working party is turning its attention to proposing to the Government's Genetics and Insurance Committee (GAIC) that genetic test results are used for two breast cancers. This is not an easy process.
"With the two breast cancers, it has taken several months to identify research institutions that have the skill to undertake the analysis for us. We then have to make sure this is bought into by the GAIC because we do not want to go through all that work and find the methodology was flawed from the outset. We are looking to get approval for the breast cancer test by the end of this year," Karlcut reveals.
Beyond these there are no plans to submit further conditions for testing approval.
"The two breast cancers are the next conditions that we will look at but after that we don't see the need to look at other conditions. We do keep an eye out for what diseases may come up in the future but there is nothing else on the horizon."
Although genetic scientists are making new discoveries daily, only the conditions already being looked at are proven to derive exclusively from a genetic fault. Other conditions are multi-factorial in nature, meaning the relationship between environment and genetic disposition is too complex for today's scientists to decipher.
The numbers involved should also be considered. There are 4,800 people in the UK currently suffering from Huntington's disease. Just 228 predictive genetic tests were carried out nationwide last year.
"Part of the reason we have a moratorium in place is because the number of predictive tests being undertaken across the UK population is still very small," Karlcut admits.
"We wanted to make sure the vast majority of people were not put off taking a genetic test so we agreed with the Government that 97% of people would not need to disclose a test result to a life office."
No sooner, it seems, has the committee settled the issue of the moratorium for a further five years, than it will have to start thinking once again about the future. In 2008 the working party will begin its next review to consider the future of genetics in insurance after the moratorium. Karlcut admits he hasn't a clue what will happen.
Fatal illness
"I really don't know beyond 2011. What is key to all this is increasing our understanding of genetics and its link to the development of fatal illness and how other factors play a part. It also depends on how many tests are taken. Even if we tested everyone and got the premium rate right, would it make any difference? No, it wouldn't."
As Karlcut points out, insurance is already an exact science which can absorb claims without access to genetic tests. What would happen, however, if applicants were able to access genetic tests without results appearing on their medical records and apply for cover knowing they are highly likely to develop Huntington's disease?
"I am aware that there are companies that offer genetic tests separately from the medical environment in the US and South Africa. These tests really are of dubious value. We do not regard it as a material issue for us but it is something we will continue to look at," says Karlcut. "There are so many other factors which are much more important to an individual's health, such as how well they look after themselves, that will have more of an effect than an anomalous gene."
Although Karlcut can be pleased with the committee's achievements under his chairmanship so far, there is still plenty of work to do.
"The breast cancer test will be the first test we have submitted for over five years, so it will be a big achievement for us. Then we can start to discuss what other conditions exist and what areas are most likely to impact insurance before preparing for the review in 2008."
In a world where genetic science looks set to play an ever greater role, Karlcut looks set to be kept on his toes.
CV
1992-present: Various roles, HSBC. Currently managing director, HSBC Life
1987-1992: Consultant, Watson Wyatt
1984-1987: Student, Cambridge University.
