Genetic Privacy Legislation: U.S and abroad

United States
A press conference will be held in Washington on Thursday to urge the House of Representatives to pass its version of (S.1053) The Genetic Information Nondiscrimination Act (see my posts here and here).  This press release indicates there will be three speakers at the press conference: Sharon Terry (CEO of Genetic Alliance), Heidi Williams (mother of two uninsurable children with a genetic disease), and Francis Collins (director of the Natl. Human Genome Research Institute).

"Insurers to be denied genetic test data." Business World (Ireland). March 30 2004.

Insurance companies are to be denied access to clients’ health information obtained by genetic testing, under a provision of the forthcoming Disability Bill.  Employers and lending institutions will be similarly barred by the provision, according to the Minister of State at the Department of Justice, Equality and Law Reform, Willie O’Dea…He said that the Bill would therefore ban the use of information from genetic tests in assessing an individual for insurance, employment or a mortgage…The Irish Insurance Federation has its own a voluntary code of practice, under which information on genetic tests is not sought for life assurance policies below the value of E381,000.

"Genetic insurance tests OK: Swiss Assembly." Washington Times. March 18 2004.

The Swiss national assembly passed a measure Thursday allowing insurers to require genetic tests when issuing large life or injury insurance policies.  The measure calls for a general ban on required genetic testing, but makes exceptions for life insurance policies worth more than 400,000 Swiss francs ($313,000) or optional injury insurance worth more than 40,000 francs ($31,000)…In issuing the measure, the national assembly asserted genetic information should remain private, but not in cases where privacy makes business impossible…The assembly found denying access to genetic information in the case of extremely expensive insurance polices could make those policies prohibitively expensive or even completely unavailable in Switzerland.


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