"Biological samples, such as tissues, DNA, and cells are an increasingly important resource for advancing research on human diseases. In the last two decades, important efforts have been made to organize such samples and data into biobanks in order to make these samples and data available for sharing between researchers. That being said, there remains many barriers and challenges to sharing between researchers and biobanks (whether regionally, nationally or internationally). The overall objective of this research project is to obtain a better definition and understanding of the ethical, legal, social and practical problems preventing the sharing of data and/or samples between biobanks, as well as between researchers, and to suggest ethically sound (i.e. just) solutions that are feasible in practice. Five specific objectives form the basis of this work: Firstly, we will conduct a systematic and in-depth review of the literature regarding barriers to sharing. Secondly we will conduct semi-structured interviews with biobank stakeholders in four European countries (Switzerland, the Netherlands, Poland and Italy). Our third objective is to follow up on the data obtained in objective 2 and conduct a survey of biobank stakeholders all across Europe. Objective four involves the ethical analysis of the barriers to sharing. An important part of this objective will be the ethical analysis of the different problems related to “justice” in sharing biological samples among researchers and defining ways to allow for just allocation of a limited resource (samples and data). Finally, the last goal will be to increase awareness of, and encourage “just’ sharing solutions among biobank stakeholders. This will be achieved through the dissemination of a “points to consider” document that will highlight the importance of sharing, the challenges to sharing and recommendations on how just and efficient sharing can be achieved."
Field of science
- /medical and health sciences/health sciences/medical ethics
- /natural sciences/biological sciences/biological behavioural sciences/ethology/biological interaction
- /humanities/philosophy, ethics and religion/ethics/ethical principles
Call for proposal
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