Working document on genetic data by Commission's Data Protection Working Party (link)

March 24, 2004

Brussels, 23 March 2004

Working Document on Genetic Data
17.03.2004 - WP 91



Given the fast moving age of technological, scientific and economic developments in the field of genetics and taking into account the variety of purposes for which the processing of genetic data may take place, the Working Party felt it was necessary at this stage to define a common approach with a view to establishing the appropriate safeguards for the processing of genetic data. The main lines of this approach can be summarised as follows:

Any use of genetic data for purposes other than directly safeguarding the data subject's health and pursuing scientific research should require national rules to be implemented, in accordance with the data protection principles provided for in the Directive, and in particular the finality and proportionality principles. The application of these principles render the blanket implementation of mass genetic screening unlawful.

Furthermore, in accordance with these principles, the processing of genetic data should be authorised in the employment and insurance fields only in very exceptional cases provided for by law, so as to protect individuals from being discriminated against on the basis of their genetic profile.

In addition, the ease with which genetic material can be obtained unbeknownst to the data subject and the relevant information can be susbsequently extracted from such material, requires strict regulations in order to prevent the dangers related to new forms of "identity theft" - which would be especially dangerous in this sector and might affect fatherhood and motherhood, or even the possibility of using the material for cloning puposes. This is why, in regulating genetic data, one should not fail to consider the legal status of the DNA samples used for obtaining the information at stake. Among the issues addressed, special importance should be attached to the application of a wide range of data subjects' rights to the management of such samples, as well as to destruction and/or anonymisation of the samples after obtaining the required information.

Finally, procedures should be put in place in order to ensure that genetic data are only processed under the supervision of qualified professionals who are entitled to such processing on the basis of specific authorisations and rules.

In Member States where the purposes and the appropriate safeguards for the processing of genetic data are not established by law, the DPAs are encouraged to play an even more active role in ensuring that the finality and proportionality principles of the Directive are fully respected.

In this respect, the Working Party recommends that Member States should consider submitting the processing of genetic data to prior checking by DPAs, in accordance with Article 20 of the Directive. This should in particular be the case with regard to the setting up and use of bio banks.

Moreover, closer cooperation and exchange of best practices between DPAs could prove to be an efficient way to compensate the present absence of regulatory framework in the field of the on-line "genetic testing direct to the public".

It is worth noting that a new, legally relevant social group is coming into existence - namely, the biological group, the group of kindred as opposed, technically speaking, to one's family. Indeed, such a group does not only include family members such as one's spouse or foster children, but it can also consist of entities outside this family circle - whether in law or factually (e.g.: gamete donors).

The Working Party intends to revisit this working document in the light of the experience acquired by the data protection authorities with regard to the processing of genetic data.

This document should be regarded as a stepping stone towards further discussions on the issues at stake. The Working Party will closely monitor the evolution of said issues and may decide to focus in detail on specific areas at a later stage, in order to keep in line with the technological developments linked to the processing of genetic data.

DG Internal Market

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