Why Are Data Sharing Agreements Important

Data exchange agreements are formal contracts detailing the data disclosed and the data used for the data. 12. Termination and modification of this agreement – It is useful to include the conditions under which the contract can be terminated. Note that this clause also contains the direction to follow to add up the data after the end. A North American funder awarded a scholarship to recipients in Thailand and India, who were responsible for collecting primary data from large datasets. Recipients collaborated with North American modellers to analyze the data. The funder has a data sharing policy in place that requires fellows to be required to share all data generated in the context of funded activities, and a data-sharing agreement has been established with these conditions. Despite repeated requests, the fellows did not provide the data they collected. The fellows made it clear that this was due to the fact that they were exploiting in previous data exchange transactions with North American institutions when they did not participate in the data analysis and received credit for their work.

The data exchange agreement has not dispelled their concerns about reciprocity and the possibility of publication. The solution was to create a parallel document on data governance. In addition to the legal agreement, this document defined the principles of sharing and described the expectations of each party in a reciprocal and equitable manner. Agreements on data exchange can take different forms depending on the nature of the common data, the nature of the stakeholders involved, the existing relationships between stakeholders and whether the agreement should be legally binding. The parties should discuss and understand what type of agreement is best. Data exchange agreements protect against data misuse and promote early communication between agencies on data processing and use issues. A data exchange agreement is a formal contract that clearly documents what data is disclosed and how the data can be used. Such an agreement has two objectives. First, it protects the authority that provides the data and ensures that the data is not misused. Formal agreements on data exchange are not necessary if informal agreements are sufficient to achieve the goal of sharing. The rights and interests of stakeholders should be properly taken into account in all the provisions adopted.

Agreements can take different forms, ranging from brief declarations of intent to detailed and legally binding agreements. Depending on the context, an agreement can be reached at the local, national or international level. To be successful, it should take into account the needs and expectations of all parties. If such issues are not addressed prior to the development of the agreement, there may be an unwarranted distribution of the benefits and missed opportunities for capacity building. The parties should take steps to ensure that the terms of reference are acceptable to all; Data providers have the opportunity to participate in data analysis. Services are distributed equitably; and potential damage to individuals and communities will be minimized. You will find examples of agreements and instructions in the area of resources of this site. In some areas of scientific research, such as genomics, international efforts are being made to develop codes of conduct applicable to all researchers in this field.

An important example is the International Code of Conduct for Genome Data Sharing, originally proposed by Knoppers et al. in 2011 (Towards a data sharing Code of Conduct for international genomic research, Genome Medicine 2011, Genome Medicine 2011, 3:46) and published in 2014 by the Regulatory Ethics and Working Group , Global Alliance for Genomics – Health (The HUGO Journal 2014) and published in 2014 by the Regulatory Ethics and Working Group, Global Alliance for Genomics – Health (The HUGO Journal 2014) , 8:1).

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