Genetic Testing Legislation and Insurance Implications

May 14, 2014 Alpha1 Admin Comments Off

Dear Friends,

At our Alpha-1 Patient Patient Conference in Marino Institute of Education on October 7th concern was expressed about the effect testing family members for Alpha-1 would have on insurance and mortgage possibilities. 

Since then I have done some research into the matter and have been in contact with the Insurance Ombudsman, IFSRA (the regulatory body for the industry) and the Insurance Information Office. I have received some good and clarified information. Firstly: Under part 4, section 2 of the Disability Act 2005, it will be illegal to use (process) the results of genetic testing for Insurance, Life Assurance or Mortgage purposes. This also applies in the case of: Employment, Health Insurance and Occupational Pension. The full text of the new legislation can be found here

In other words, genetic discrimination will be illegal in Ireland from Dec. 31st 2005.

What will be considered when a person is looking for a pension, mortgage, etc. will be the usual criteria:

– Health history (symptoms etc.)

– Smoking status

– Usual questions pertaining to family history of heart disease etc.

It was emphasised that although the approach may vary from company to company, they are very competitive and are interested in individuals and as long as we tell it as it is there should be no great problems. Although genetic discrimination does not seem to have been generally applied there was always the fear that it would. Now that fear is removed and that is good news for us all. I plan to arrange an Insurance Information slot for our next patient conference.

I trust that this information will put minds at rest.

Yours sincerely,
Larry Warren, CEO Alpha One Foundation.

More information on this issue can be found on and a statement from Frank Fahey, TD, outlining the main terms of the legislation can be downloaded here.