SIENNA genomics public consultation: Webinar for patients and publics on 18 January

Most genetic disorders are rare and research is necessary to develop treatments for future patients. The SIENNA project has developed stakeholder informed proposals for the ethical management of new and emerging technologies. One of these proposals is operational guidance for ethical self-assessment of research in genetics and genomics.

Patients are key stakeholders for this research. Therefore, the SIENNA project invites patient organisations, patient advocates, patients and their carers to a webinar explaining the proposal with the aim to ensure patients are able to give informed input in this process.

In this webinar, Senior Professor Mats G. Hansson, Uppsala University, leader of the SIENNA project's work stream for human genomics will present the proposal for operational guidelines for an ethical self-assessment of research in genetics and genomics. The self-assessment should be carried out by the researchers' themselves. Between 11-25 January 2021, this proposal is open for anyone to comment in a public consultation along with other proposals from the SIENNA project. For genomics, we are keen to receive input form patient organisations. In this webinar, the proposal will be presented in for a lay audience, and there will be an opportunity to ask questions before submitting your response.

The webinar will be held on Zoom. This is an open event, but registration is needed. We look forward to your questions and your input!