Responses from data protection authorities regarding national legislation governing genetic data
This dataset compiles the responses of the data protection authorities of each Member State of the European Union interviewed on the existence and content of national legislation governing genetic data on their territory.
As part of a doctoral thesis in law on genetic data and the role of European Union law in regulating it, data protection authorities were asked two questions:
- Does the legislation of the country in which you are based authorise freely accessible genetic testing (such as MyHeritage, 23andMe or Ancestry) on its territory?
- If so, is there legislation governing the processing of data, including genetic data, by these companies? Is there national legislation on the protection of genetic data, whether or not this legislation forms part of data protection legislation?
This dataset compiles the responses provided by these authorities, with the caveat that not all of those contacted responded. Most of them refer to the relevant national legislation. The dataset highlights the differences between national legislation within the European Union and notes the absence of a specific framework for certain recent practices, in particular freely accessible genetic testing.