B1MG D1.5 Stakeholders trust in genomic data sharing landscape analysis

Denis Horgan, Stefania Boccia, Regina Becker, Serena Scollen, Arshiya Merchant, Carla van El, Ilda Hoxaj, Michele Sassano, Angelo Pezzullo, Daria Julkowska
2022 Zenodo  
This scoping report represents a mission-oriented approach to supporting citizens' engagement and public trust in genomic data sharing, scoping out and suggesting possible approaches. It recognises from the outset that the issues of engagement and trust extend beyond the indispensable involvement of citizens to embrace a much wider range of stakeholders whose buy-in will also be essential to success. This review takes account of the B1MG and 1+MG, and aims to offer conceptual and practical
more » ... for building on those achievements to bridge potential and actual benefits to science and society with a specific focus on citizens. The rapid progress that has been made in genomics over the past two decades has created much debate (Boccia, 20141). On the one hand, genomics has the potential to deliver earlier diagnosis, more effective prevention programmes and more precise targeting of therapies, in some cases challenging our understanding of the nature of certain diseases. On the other hand, it raises a range of ethical, social and legal challenges (ELSI), including among other issues, protection and ownership of data, the need for care in interpreting data, potential misuse of data by commercial organisations, especially insurance companies, and questions about autonomy and the potential for stigma (National Research Council, 1988). As insights from genomics are increasingly used in clinical settings to inform personalised medicine, these ELSI considerations have been broadened, with many concerned this will widen existing inequalities in health care (Brothers & Rothstein, 20152). While genetic testing may improve disease prediction, diagnosis, and treatment, the rapid uptake and application of genetics and genomics raise numerous ethical, legal, and social issues (ELSI). One of the most prominent among these is the growing number of possibilities of using genetic information to justify treating individuals differently or profiling specific population groups that may lead to genetic discrimination (GD) (Kim, 20213 [...]
doi:10.5281/zenodo.6382430 fatcat:fsakrtiynzghhpxodfl5qxuod4