Surveying the perception of ownership barriers for the sharing of genomic data from pathogens
For this task in WP12, we aim to interview Expert Advisory Panel (EAP) members, as well as identified stakeholders and key opinion leaders outside of COMPARE to gain insight into their perceptions regardingthe ownership barriers for the sharing of genomic data from pathogens.
COMPARE is a large collaborative project with the intention to speed up the detection of and response to disease outbreaks among humans and animals worldwide through the use of new genome technology. Our vision is to become the enabling analytical framework and globally linked data and information sharing platform for real-time analysis and interpretation of sequence-based pathogen data in combination with associated data (e.g., clinical, epidemiological data) in an integrated inter-sectorial, inter-disciplinary, international 'One Health' approach.
To be able to create such framework in the public domain, barriers in data sharing need to be overcome. Therefore, the work package 12 from the COMPARE project was created to identify, clarify and, as far as feasible, develop practical solutions for barriers that hamper the timely and openly sharing of data through the COMPARE framework.
In this survey, as part of work package 12, we focus on barriers related to ownership. Correspondingly, ownership barriers for microbial genetic data sharing is defined, in this research, as instruments used to restrict data exchange, resulting from the underlying willingness and freedom (or not) to share, modify and profit from this data. Ownership is closely related to issues such as property rights, publishing and copyrights, privacy, proportionality and reciprocity. Ownership also involves responsibility: for the protection of privacy and economic interest of original data-providers, and of compliance to regulations.
In more detail, property rights are granted to microbial genetic data for efficiency and economic reasons in order to guarantee sufficient investments in collecting and sharing this data and allowing conditions to support innovation. However, these rights, for ethical and equity reasons, are also subject to laws and regulations, following matters of e.g. privacy (untraceable data), proportionality (positive risk/benefit ratios) and reciprocity (benefits-sharing policies). Therefore ownership barriers touch upon legal, ethical, political, motivational and economic barriers that can limit data sharing. Unless these ownership barriers are better understood, solutions may remain deficient.
That is why we want to know your perceptions in relation to ownership barriers for real-time sharing microbial genetic data in such an open platform. In our interview we will ask you three questions:
- Which are from your perspective the most important/limiting barriers to real-time sharing of microbial genetic data in such an open platform?
- Which barriers do you consider to be solid barriers (step-limiting or blocking issues) for this framework?
- Which barriers do you consider to be soft barriers (limiting or delaying issues but do not stop the process of data sharing)?
We appreciate a lot your contribution and if appreciated, feedback will be provided by us in relation to the identified barriers and their prioritization.
On behalf of the COMPARE WP12 team,
Martine van Roode (martine.van.roode@rivm.nl) and Carolina Ribeiro
(carolina.dos.santos.ribeiro@rivm.nl)