Framework for ethical self-assessment in genomic research



PhD students are expected to reflect on ethical aspects of their research projects. This requirement is stated in legal premises and regulatory frameworks for academic institutions around the world. When applying for research funding researchers are also expected to make an ethical assessment related to their proposed research project. SIENNA has developed an ethical framework for human genomics. This has been translated to operational guidelines for ethics self-assessment. On 11 January 2021, we invite you to take part in a public consultation. Want to know more? Sign up to receive the documents!

(Image removed) There is a risk that this assessment becomes a one-time event, maybe just ticking some pre- and generally defined boxes. Ethics as a fait accompli, rather than as a continuous reflection about one’s research as science develops and societies change.

In trying to bring research ethics back to its roots, as a matter for self-reflection by scientists themselves and their communities, the SIENNA project has developed an ethical framework for research on human genomics. The full report has been submitted to the European Commission for review.

This work will be translated to operational guidelines for ethical self-assessment of research in genetics and genomics. We suggest it to be used by researchers at all levels, from graduate to senior researchers and for funding agencies. The guidelines will go through a process of public consultation in January 2021.

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Ethical framework

Mats Hansson, & Solveig Fenet-Chantereau, SIENNA D2.7 Proposal for an ethical framework for the assessment of genomics technologies and for research in genetics and genomics. Submitted public deliverable from the SIENNA project, awaiting approval from the European Commission

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 an 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.

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. This proposal is currently undergoing public consultation and we are seeking 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!

Register for the webinar 





Project structure


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