30 September 2014
To improve health care and validate research there is a need to provide easier but also secure and ethical access to samples and data. This is the guiding principle in a new charter for the sharing of biospecimens and data published by an international group of researchers in this month’s European Journal of Human Genetics.
In theory, data sharing stimulates research, making the process less burdensome. However, the ethical and legal frameworks in different countries sometimes contradict each other making collaboration difficult.
Lead author and RD-Connect partner, Deborah Mascalzoni, philosopher at the Centre for Research Ethics & Bioiethics (CRB) at Uppsala University believes another reason for these difficulties is the investment it takes to build a sample collection.
“Sometimes researchers are not that keen on sharing. There is a fear that the valuable work they have put into their sample collection will not be recognized. To try and solve that problem, we have provided a framework for recognition in the charter”, says Deborah.
The charter conforms with relevant regulation, both legal and ethical, and provides a comprehensive tool for researchers. It specifically deals with consent, data quality and criteria for acknowledgement. It also provides a very hands-on tool: data and material sharing agreements are often written in a legal language that can be difficult to understand for the scientists and administrators that use them. To help solve this, the charter provides a clear and simplified template. The principles outlined in this charter can be used as a guide for the development of other access agreements.
In summary the charter:
• Contains a template for both Material (MTA) and Data (DTA) Transfer Agreements.
• Provides a framework for the acknowledgement of biospecimen and data collections.
• Incorporates all relevant international legal and ethical regulations.
A copy of the charter can be found here.