The chairman of the National Institution for Health and Clinical Excellence says the attitudes of the health insurance industry mean Huntington's Disease may be far more prevalent than official figures show.
Professor Sir Michael Rawlings says the fact that insurers can charge higher premiums for those at risk of contracting the disease means many potential sufferers may have gone unrecorded.
The child of a Huntington's sufferer has a 50% chance of inheriting the disease, which usually takes effect in people's 30s and 40s. Because this proportion is so high, insurers treat it as an exception to the general principle of not adjusting medical insurance to take account of genetic risks.
Official figures estimate 7 people per 100,000 suffer from the disease. However, 6,702 people are receiving treatment from the Huntington's Disease Association, which works out at 12.4 per 100,000. Taking into account people who haven't been referred to the association, it's almost certain the problem is at least twice as widespread as previously believed.
Professor Rawlins believes there is also a problem in knowing how many people have inherited the disease and do not carry the symptoms (but can still pass them on to children). That's partly through fears that taking the necessary tests could mean premium hikes.