Data sharing in genomics: SIENNA's proposal for an international Code of Conduct

The SIENNA project's proposal for an international Code of Conduct for data sharing in genomics was recently published in Developing World Bioethics. Want to know more? 

This text was originally published on Uppsala University's Ethics Blog: 

In genomics, not only individual genes are studied, but the entire genome. Such studies handle and analyse large amounts of data and are becoming increasingly common internationally. One of the challenges is managing the sharing of data between countries around the world. In addition to data protection legislation varying internationally, there are concerns that researchers and research participants from low- and middle-income countries may be exploited or disadvantaged in these exchanges.

Lawyers and bioethicists have therefore called for an international Code of Conduct for data sharing in genomics. A proposal for such a code was recently published in an article in Developing World Bioethics. The article, written by Amal Matar and nine co-authors, describes the process of developing the Code of Conduct and concludes with a nearly 4-page proposal.

The Code of Conduct is intended for researchers and other actors responsible for data management in international genomic research. The code lists ten ethical principles of direct relevance to data sharing. Next, best practices are described in 23 Articles covering seven areas: Data governance system; Data collection; Data storage; Data sharing, transfer and access; Compelled disclosure; Data handling from low- and middle-income countries; Public and community engagement.

Read the article with the proposal for a Code of Conduct here: A proposal for an international Code of Conduct for data sharing in genomics.

Matar, A., Hansson, M., Slokenberga, S., Panagiotopoulos, A., Chassang, G., Tzortzatou, O., Pormeister, K., Uhlin, E., Cardone, A., & Beauvais, M. (2022). A proposal for an international Code of Conduct for data sharing in genomics. Developing World Bioethics, 1– 14. https://doi.org/10.1111/dewb.12381

By Pär Segerdahl