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Genetic discrimination a barrier to equality says charity chief

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One of the country’s leading neurological support charities claims that genetic discrimination is one of the the last barriers to equality.

John Eden, chief executive of the Scottish Huntington’s Association (SHA), the only charity supporting people living with the degenerative brain condition Huntington’s disease (HD), said he was aware of several cases of people from HD families being refused life insurance and denied career opportunities based on their genetic status.

“Modern society has fought long and hard to root out discrimination on the grounds of race, sex or disability; those remain battles still to be fought, but unfortunately discrimination on the basis of genetics is yet to be recognised, let alone legislated,” he said.

John said he was regularly being approached by HD families struggling to get life insurance because they may or may not test positive for the condition.

HD is a genetic condition causes changes to muscle control, thinking processes and results in long-term mental health issues. There is no cure and those living with the condition will require 24 hour care as it progresses into its later stages. It is also hereditary with each child of someone diagnosed with HD is at 50% risk of developing the condition themselves.

“When applying for life insurance, for instance as part of a mortgage application, some of our family members are being specifically asked about family medical history which, in the case of Huntington’s disease, tells an insurer a person’s genetic risk. This means people from HD families may simply not get the insurance they need to buy their own home,” he said.
But according to the charity access to life insurance is only one area of discrimination people living with genetic conditions must face.

“Young people living in HD families have been refused application to the armed forces and police solely on the basis of being ’at risk’ of inheriting the condition. Most employers would not get away with this, but both forces are exempt from the 2010 Equalities Act.

“The fact is that these are healthy young people who might get an illness in the future and they are being disadvantaged solely on the basis of that possibility; even if a young person did test positive for HD they would have many years of productive service ahead of them. Are we really willing to accept a situation where an individual’s ability to contribute to society depends on what their future health may be decades down the line?

“All of us carry genetic mutations; some cause disease others not. If this legal discrimination is not challenged, today we face the disturbing possibility of a genetic underclass. Today, it is HD, but tomorrow who knows what other group with a genetic difference will be deemed as too high a risk to insure or employ,” he added.

“Unless we confront this now many people in the future may find themselves the victims of this new form of discrimination.”
 

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