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Patients' Genetic Rights Differ 'Significantly' Across EU, EuroGentest Study Shows

NEW YORK (GenomeWeb News) — EuroGentest has issued two reports suggesting that patients’ genetic rights vary in many ways from country to country across the European Union.
 
The EU-funded group said in a statement today that it has found differences involving issues of “consent, confidentiality, access to records, insurance and employment” across the continent.
 
Issued on what EuroGentest said marks the 10th anniversary of the European Convention on Human Rights and Biomedicine, the report “highlights major variations and anomalies across the community,” EuroGentest said.   
 
The first two reports in its series examine Denmark and the Czech Republic. EuroGentest said that although the two countries ratified the Convention, variations in standards and practices between these two countries were “significant.” 
 
In Denmark, EuroGentest member Herman Nys said that while a new patient-rights act was enacted earlier this year covering privacy, insurance, and employment, “there are still gaps in areas such as rights of minors.”
 
Meantime, in the Czech Republic, “a comprehensive legislative framework of patient rights does not exist at the moment,” Nys said.
 
Nys said that in the Czech Republic rights for informed consent, for the right of individuals to access their health information for privacy, have been legislated only “fragmentally and incompletely.”  
 
The group said that at this point, in the Czech Republic, an office called the Czech Public Defender of Rights, or individual judges, have the responsibility for handling such issues.
 
EuroGentest said the Czech Society for Medical Genetics endorsed the report, and viewed it as an “important step” in creating a framework for patients’ genetic rights in the country.

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