Genetic testing can go a long way in predicting certain diseases or conditions, but that has to be balanced with the danger of people being unfairly denied protection insurance, Health & Protection’s Protection Forum has heard.
Tara Clancy, senior lecturer and honorary consultant genetic counsellor and research consultant at Manchester University, warned: “There’s certainly lots of reports about people unable to get insurance – a combination of being declined or unaffordable; what’s very hard to get to the bottom of is at what point are they unable to get it.“
Clancy emphasised that genetic testing can help to have a diagnosis made, because it may guide management or treatment, or warn if children might be at risk of a condition.
But she warned there was also a danger that people may unfairly face difficulty in getting insurance due to having had a genetic test – or even being married to someone who had one.
“There has been anecdotal reports through the Huntingdon’s Disease Association of increased premiums for those who have undergone a predictive test and don’t carry the HD variant, and also for spouses of affected individuals but who were never at risk themselves.”
She said one solution to the issue was to build greater trust by ensuring there were clear definitions on why someone may be declined insurance.
Clearer definitions
Clancy said: “What could help is clearer definitions or a better understanding of definitions, building trust and improving trustworthiness – so us having some objective evidence about who is being turned down or dissuaded from getting insurance, why they are being turned down or dissuaded and perhaps we could collect anonymous data on policyholders experiences with disclosure.
“It would be really important to think about the availability of independent medical reviewers to ensure fairness and minimise bias.
“It can be quite easy to think of commercial interests as vested interests, and not be open to wanting to be fair and transparent.”
To highlight the point, Clancy added: “Our DNA is not a blueprint and it is not an instruction manual. Most health conditions are not genetic.”
Identifying variants
She noted that genetic testing can identify variants which are essentially just a different alteration of the gene’s DNA sequence.
“So all of us here, all of us in this building, all of us in London – we’ve got about five million genetic variants,“ she said.
“Most of these simply contribute to human diversity and have no influence at all on health.
“But others do increase the chance of certain conditions or effects, for example how someone might respond to medication. And we can inherit these variants from our parents or I might have a variant that’s occurred for the first time in me.
“So we’ll see five million genetic variants we all have – about 100,000 are rare variants and about 50 are what might be described as disease causing.”
That could include conditions like Huntington’s disease, sickle cell and cystic fibrosis.
