Disability Act 2005

felicity290

Not looking for legal advice, rather guidance on interpreting the genetic testing section of the Disability Act 2005.

A close friend is having to decide whether to undergo genetic testing for a hereditary (terminal) disease. They've had their first appointment of the process and they were advised depending on the result it could affect their insurance options, whether they'd be granted a mortgage, and future employment. With this particular disease they could be asymptomatic for decades.

Under Part 4 section 2 of the Disability Act 2005 it says that;
"A person shall not engage in the processing of genetic data in relation to—

(a) the employment of a person save in accordance with the provisions of section 12A of the Data Protection Act 1988 (as inserted by the Data Protection (Amendment) Act 2003 ),

(b) a policy of insurance or life assurance,

(c) a policy of health insurance or health-related insurance,

(d) an occupational pension, a retirement annuity contract or any other pension arrangement,

(e) the mortgaging of property."

Does this mean that if my friend undergoes the test and receives an unfavourable result they will need to disclose this during an future insurance, mortgage, loans, jobs, etc. applications?

Thanks

Sorry, but I can't post a link to the Act as I'm a new user.

Victor

Beware of questions like "Have you ever undergone genetic testing?" (not sure if that is legal to ask by the relevant parties).

Pro Hoc Vice

felicity290 wrote: »

Not looking for legal advice, rather guidance on interpreting the genetic testing section of the Disability Act 2005.

A close friend is having to decide whether to undergo genetic testing for a hereditary (terminal) disease. They've had their first appointment of the process and they were advised depending on the result it could affect their insurance options, whether they'd be granted a mortgage, and future employment. With this particular disease they could be asymptomatic for decades.

Under Part 4 section 2 of the Disability Act 2005 it says that;
"A person shall not engage in the processing of genetic data in relation to—

(a) the employment of a person save in accordance with the provisions of section 12A of the Data Protection Act 1988 (as inserted by the Data Protection (Amendment) Act 2003 ),

(b) a policy of insurance or life assurance,

(c) a policy of health insurance or health-related insurance,

(d) an occupational pension, a retirement annuity contract or any other pension arrangement,

(e) the mortgaging of property."

Does this mean that if my friend undergoes the test and receives an unfavourable result they will need to disclose this during an future insurance, mortgage, loans, jobs, etc. applications?

Thanks

Sorry, but I can't post a link to the Act as I'm a new user.

Just to make it easier for anyone else it is section 42 of the Act. http://www.irishstatutebook.ie/eli/2005/act/14/section/42/enacted/en/html#sec42

This section prohibits the processing of such data in certain circumstances, to for example stop Insurance companies insisting on such tests. The issue will arise in again for example insurance, the person seeking insurance to give the information that he is aware of for example that he has a inherited genetic condition. Under the doctrine of ]Uberrimae Fidei (utmost good faith) the person seeking insurance must give any important information to the insurance company. But that in its self is not processing such data.

Johnboy1951

If the person applying for insurance (for example) is aware of any relevant fact and does not disclose it, then the insurance is void.

Pro Hoc Vice

Johnboy1951 wrote: »

If the person applying for insurance is aware of any relevant fact and does not disclose it, then the insurance is void.

Yes. Except in the case of third party motor insurance.

felicity290

How is it possible for anyone who undergoes genetic testing to receive a fair insurance quote? Or get a mortgage, or job? All they've been told is they have a (high) probability of developing an illness but could be asymptomatic for the majority of their adult life.

Pro Hoc Vice

felicity290 wrote: »

How is it possible for anyone who undergoes genetic testing to receive a fair insurance quote? Or get a mortgage, or job? All they've been told is they have a (high) probability of developing an illness but could be asymptomatic for the majority of their adult life.

Hence why the person was warned.

Victor

Pro Hoc Vice wrote: »

But that in its self is not processing such data.

But in obtaining the information, the insurance company does process it.

felicity290

Johnboy1951 wrote: »

If the person applying for insurance (for example) is aware of any relevant fact and does not disclose it, then the insurance is void.

Surely it's only void if a claim is made where the undisclosed information is pertinent?

felicity290

I've done some searching and came across this site which says the results of a genetic test cannot be used against the person tested;

"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 IrishHealth.com and a statement from Frank Fahey, TD, outlining the main terms of the legislation can be downloaded here.

This is the site address, I've put a space in between the . and ie as I still cannot post urls:
alpha1. ie/genetic-testing-legislation-and-insurance-implications

The Disability Act 05 Guide pdf states;
"The safeguards provide that -
the results of a genetic test can't be used in relation to insurance, a mortgage, a personal pension or employment"
Again, I've put a space in between the . and ie;
inis.gov. ie/en/JELR/DisabilityAct05Guide.pdf/Files/DisabilityAct05Guide.pdf

While it appears for all intents and purposes the information from a genetic test cannot be used against someone, should someone disclose the results of a test? I'm erring on the side of why should they and run the risk of stealth prejudice. Insurance companies and banks are a law unto themselves at the best of times.