Genomics: Ethical, legal and social analysis

Today, DNA can be “read” much faster and cheaper than just a decade ago. Genetic testing can reveal information about the health of adults, children, and foetuses. At the same time, another new technology for gene editing has become available: CRISPR/Cas9. It allows for modification of DNA in humans. In the future, this may be used to cure diseases. Yet, some uses of these technologies raise serious ethical concerns that need to be considered carefully.  

How can we benefit from knowing our DNA information? What are the risks of sharing genetic data? Should we modify the genome of human embryos in laboratories? The SIENNA project will address these and other ethical, legal and social aspects of genomic technologies using a structured approach.

We started our work with a state-of-the-art review of the field to define what our analysis of the ethical, legal and social implications (ELSI) of human genetics and genomics should cover. In the next steps we will:

  • Analyse legal documents, including human rights requirements that are relevant to genomics
  • Survey guidance documents for research ethics protocols and professional ethics codes.
  • Identify and analyse current and potential future ethical issues related to genomics.

The SIENNA project will also engage a wide range of stakeholders through workshops, surveys and citizen panels. Input from these stakeholders will inform our analyses. At the end of the project, we will propose an ethical framework to help guide genomic research, and the use of genomic technologies.