Genomics: Enhancing legal frameworks
We are developing proposals for ethical human and human-rights respectful genetics and genomics. We identified potential changes needed in existing legal and human rights frameworks at the international, EU and national levels.
In this report, currently pending approval from the European Commission,we offer recommendations to improve the enforcement, uptake and effectiveness of existing legislation in these fields. We also discuss actions to take, actors involved, what should be prioritised and potential ways to address any implementation challenges. The report also features a discussion of the interrelations between ethics and law from the perspective of policymakers.
Key take-aways for human genetics and genomics
- At the international level a human genetics and genomics treaty is necessary to overcome the existing challenges and fulfil responsibilities towards future generations. Although SIENNA acknowledges the difficulty in agreeing on several important principles relating to the human genetic and genomic technologies, the state of the art of the technologies on the one hand and the need for further developments, on the other hand, require it to be addressed as an urgent priority of the UN. Additionally, there is a need to continue clarifying how the existing human rights norms respond to the specific questions in the area of genetics of genomics, including new and emerging technologies in the field and their applications.
- At the EU level, we need to remove hurdles associated with regulatory fragmentation and approach to the governance of human genetic and genomic technologies. As a longer-term objective, SIENNA has identified and shed light into the avenues to ensure better potential to exploit the area of human genetics and genomics to further the EU objectives, in particular those relating to research and technological development, including if the European Health Union is advanced.
- At the national level, there is an urgent need to revisit comprehensiveness, oversight, and enforcement strategies of the national legal frameworks and their capability to adequately respond to the scientific advances in the area of human genetics and genomics.
For more targeted and specific recommendations, download our report!
Stakeholder consultations
Ethics and human rights standards need to be considered in development and use of emerging technologies. SIENNA is working to ensure human rights and other important societal values are respected in human genetics and genomics, human enhancement technologies, and AI and robotics. As part of the process of developing and finalising its recommendations, SIENNA consulted stakeholders and engaged with policy-makers. Do check out the webinar that was held as part of this process, presented by Santa Slokenberga, Uppsala University.