Centre for Research Ethics & Bioethics (CRB)

The principles for sharing

2014-09-23

To improve health care and validate research, we need to provide easier access to samples and data: Access that at the same time is ethical. This is the guiding principle in a new charter for sharing of biospecimens and data published by an international group of researchers in the European Journal of Human Genetics.

The value of collections of data and biospecimens is rising. But this doesn’t mean there is more sharing of samples or data. One reason is the different ethical and legal frameworks that are making it difficult for researchers in different countries to collaborate. Deborah Mascalzoni, philosopher at CRB, is one of the authors. According to her, another reason has to do with 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 Mascalzoni.

Sharing stimulates research, making the process less burdensome. At least in theory. But the ethical and legal frameworks in different countries sometimes contradict each other, making collaboration difficult. The charter conforms with relevant regulation, both legal and ethical and provides a comprehensive tool for researchers. It deals with consent, data quality, criteria for acknowledgement and much more. 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 same principles can be used for other access agreements.

CHARTER FACTS:

  • Contains template for Material and Data Transfer Agreements
  • Provides framework for acknowledgement for the collections
  • Incorporates relevant international legislation and ethical regulation

Read charter: International Charter of principles for sharing bio-specimens and data

By Josepine Fernow

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