This report was produced by the Foresight, Behavioural Insights & Design for Policy Unit of Joint Research Centre (JRC) under the initiative towards enhanced research in the area of “Omics in Society with a focus on Genomics”. The work presented tries to address the main research areas in line with current European Commission (EC) policy priorities for foresight and citizen engagement planning. Through an extensive review of literature, corporate and media discourses, as well as do-it-yourself bio movement’s Internet sites, several thematic narratives have been identified. These narratives come from different actors telling about on-going promises, interests, expectations and concerns across the human genomics field.
The present report maps also key players working in the human genomics field around the world, identifying the most expressive or emblematic companies. We observe co-existing narratives across the analysed companies’ discourses in particular in relation to the claims and promises associated to the technological advances in human genomics. Attractive narratives are offered to citizens, appealing to personal needs and interests (e.g. ancestry, genetic make-up, or genetic risks), and often overlooking ethical considerations. The literature and other sources covered in the report suggest that the human genomics field appears to be strongly consolidated in North America, with a high number of institutes and companies operating in the field. The human genomics field also appears strongly connected to big data, artificial intelligence (A.I.) and blockchain technologies debates. This has particularly gained momentum due to the involvement of tech giants such as Google, Amazon and Microsoft.
We have identified relevant EU legislation and institutions in the genomics field and evidence suggests that the European Union lacks a coordinated and uniform regulation in this domain, in particular in relation to human genomics. Combined with an inability to accompany rapid advances of scientific fields, this sets a scenery of grey areas in the legislation that can be potentially exploited by practically anyone - be it companies, academia, or individuals. In fact, as we were finalising this report, Chinese scientist He Jiankui claimed he had produced the first babies with an edited genome.
The analysis of major ethical concerns on the human genomics field urges the need of inclusion of non-scientific groups into the ethical debate, as well as the need to address the complete non-compliance of any international guidelines by Direct-to-Consumer Genetic Testing (DTC-GT) companies, the fuzziness surrounding DTC-GT business model, and concerns surrounding confidentiality security in the age of -omics with possible social repercussions. Similarly, the lack of consistent ethical guidance on DIYbio needs attention.
A boost in the presence of genomics related topics in the news media is also evident, reflecting to a certain extent an upsurge of reports of optimistic portrayal that can lead to misleading and misinformed enthusiasm. The importance and influence of new media and social media is a major concern that needs to be addressed in the evaluation of information’s quality and impact in the public.
Finally, this report does not present an exhaustive evaluation of citizen engagement on the social or ethical impacts potentially arising from the developments in the human genomics field, but it identifies common problematics transversal to the studies included in our analysis. We can say that not many citizen engagement activities about human genomics were found, suggesting that there is a need for the creation of dialogue spaces about this technology and its potential applications. However, it offers an updated mapping of DIYbio communities and activities, illustrating the growth of this type of grassroots engagement activities. The report informs the next steps of implementation of citizen engagement activities in the human genomic field.