Data protection notice SIENNA project

SIENNA ( is a three-and-a-half-year EU-funded Horizon 2020 project with 13 partners, focusing on ethical and human rights challenges posed by human genomics, human enhancement and human-machine interaction technologies. This notice informs you about the website’s processing of your personal data.

The SIENNA consortium is committed to user privacy and data protection. Any personal data you provide will be processed in compliance with relevant EU and national data protection laws. By agreeing to submit your information to SIENNA, we will process your personal data in accordance with the purposes, requirements and restrictions as set out in this notice.

Data controller

The data controller is the individual or body which, alone or jointly with others, determines the purposes and means of the processing of your personal data. The SIENNA data controllers are:

  • Philip Brey, University of Twente,
  • David Wright, Trilateral Research Ltd,
  • Heidi Howard, Uppsala University,
  • Josepine Fernow, Uppsala University, (SIENNA website only)

Purposes and legal basis for processing personal data

SIENNA will only process your personal data:

  • To engage you in our research, consultations, interviews and events.
  • To share our findings and results with you via mailings, the website and newsletters.

As a rule, we will anonymise personal data. Personal data will only be included in any public reports with your prior, explicit consent. Only personal data that is necessary to achieve these processing purposes will be collected, and this data will not be used for purposes other than those stated here. No data will not be shared with third parties (i.e., people not in the project).

Our primary legal basis for processing your personal data is your consent. You have the right to withdraw consent at any time without any negative consequences. Also, another legal basis on which we process your personal data is our legitimate interest to ensure our project can communicate with you, its stakeholders.

Recipients of this personal data

Your personal information will be received and processed by Uppsala University, Trilateral Research and University of Twente. If required, data may be processed, with your prior consent, by other researchers of the SIENNA project. Access to this information will be restricted to these stated recipients using access controls including secure logins and physical controls.

Period and nature of processing, and the rights of the individual:

Your personal information will be used until the purpose for which it was collected ends or the end of the project; it may be archived per contractual requirement for up to five years after the end of the project (31 March 2021) or until you withdraw your consent, after which point it will be deleted. In addition:

  • You have the right to request from the controllers’ access to the personal data we have that pertains to you.
  • You have the right to request the controllers to rectify any errors in your personal data to ensure its accuracy.
  • You have the right to request the controllers to erase your personal data.
  • You have the right to request the controllers to restrict the future processing of your personal data, or to object to its processing.
  • You have the right to data portability -- upon request the data controller should provide you with a copy of all data we have regarding you in a structured, commonly used and machine-readable format.
  • As the processing of your personal data occurs based on your consent, you have the right to withdraw your consent at any time and we will cease further processing activities involving your personal data. However, please note that this will not affect the lawfulness of any processing already performed before you withdraw your consent.
  • You have the right to lodge a complaint with a supervisory authority, such as your national data protection authority.

By submitting my contact information to SIENNA:

I acknowledge that I have been informed of, and understand, my rights in relation to the processing of my personal data for the purposes of the SIENNA project:

I freely consent to the processing of my personal data by SIENNA for the purposes set out above.

Last modified: 2021-06-09