The European Society
of Human Genetics

Data Protection Policy

Data Protection Policy

General Policy

The European Society of Human Genetics assures to collect and use only those personal data of its members which is necessary for the support and administration of members as well as for the pursuit of the association's goals. The data collected and stored by the European Society of Human Genetics for the processing, administration and termination of the membership defined by the statutes and the purpose of the association, include personal data (name, address, date of birth, E-Mail address, telephone and fax number) and possibly other data necessary for the type of membership [professional affiliation, training status, payment information, date of graduation…]. See the membership form for more details.
As a rule, the European Society of Human Genetics will not collect or store credit card or sensitive data.

According to the GDPR, every member has a right to get information about the data stored by him or her. The European Society of Human Genetics processes and stores the personal data provided only as long as this is necessary for the fulfilment of the aforementioned purposes. This data will be deleted once the purpose has been achieved and after statutory retention obligations have expired. Each member has the right to rectification of its data, revocation of the consent or deletion of personal data, as long as this does not contradict the purpose of the association as stated in the statutes of association.

The European Society of Human Genetics collects and stores this data by means of data processing equipment (EDP) to fulfil its statutory purposes and tasks in accordance with the provisions of the EU General Data Protection Regulation (GDPR) and has implemented appropriate technical and organisational measures to ensure that no unauthorised access to the data made available (and no unlawful processing of the data) takes place.

As far as this is necessary for the fulfilment of the contract or justified within the scope of justified interests of the European Society of Human Genetics, personal data will also be transmitted to contract processors (service providers) employed by the European Society of Human Genetics, if they comply with the data protection requirements specified in writing by the European Society of Human Genetics and commit themselves to secrecy towards the European Society of Human Genetics. For this purpose, an order processing agreement is concluded with the service providers used.
Data is only transferred to countries outside the EU or the EEA (so-called third countries) with your consent and if this is necessary for the performance of the contract, i.e. in the case of a joint membership with the American Society of Human Genetics.

Further use of your data

Membership related/official correspondence
The membership office will send you regular correspondence in relation to your membership (e.g. invitation to renew your membership, confirmation of payment, invitation to elections, call for comments on policy papers or other activities of ESHG committees, call for comments by the European Commission etc.).

ESHG Newsletter
The ESHG will also send regular newsletters on ESHG activities, an invitation to complete an anonymised survey at regular intervals, as well as announcements of future ESHG conferences or ESHG supported courses. You may unsubscribe from these e-mailings at any time by clicking on the unsubscribe link or by updating your preferences in your member record on the ESHG website. This will not affect official correspondence from the conference secretariat.

Emailings on behalf of third parties ('Board approved mailings')
On behalf of third parties, the ESHG periodically e-mails members who have individually consented to receive board-approved mailings on topics which may be of interest to professionals in the field. These emails may be related to profession- and policy-related activities or other communications from non-commercial entities active in Human Genetics (e.g. the European Board of Medical Genetics and other societies, networks or groups active in the field). These emails require prior approval by the ESHG Board.
Email or other contact details of members will not be passed on to third parties in this context.
You may unsubscribe from these e-mailings at any time by updating your preferences in your member record on the ESHG website. This will not affect official correspondence from the membership secretariat.

ESHG Membership Directory
The ESHG provides a directory of members in the password protected member area of the ESHG website. Your consent provided, the following data will be visible to other ESHG members: Name, degree, professional address. The full list of members cannot be downloaded from the website. You may withdraw from the listing at any time by updating your preferences in your member record on the website.

Exchange of data with third parties

European Journal of Human Genetics (EJHG)
The ESHG will pass on postal addresses of print subscribers to the publisher of the official journal EJHG (currently SpringerNature) in relation to the dispatch of the print issues of the EJHG.
Individual consent provided, data of ESHG members will be forwarded to the publisher in relation to email services provided by the publisher, including but not limited to alerts regarding upcoming issues of the Journal (so-called 'TOC alerts'). You may unsubscribe from the 'TOC alerts' at any time by clicking on the unsubscribe link or by updating your preferences in your member record on the ESHG website. This will not affect official correspondence from the membership secretariat.

Joint memberships
In the context of joint memberships, your personal data and payment history will be sent to the ESHG by the national society on the basis of the contractual agreement between the ESHG and the national society.
In the context of a joint membership with the American Society of Human Genetics (located in a the United States, a 'third country' currently not considered having an adequate level of protection by the European Commission), your data will be forwarded with your consent as this is necessary for the performance of the contract.

 

For concerns and questions regarding data protection of the European Society of Human Genetics, please contact the administrative office: dataprotection(at)eshg.org.