The Alpha–1 Foundation seeks to promote the exchange of data among investigators with the hope and expectation that this will expedite the translation of research findings into scientific knowledge and improved patient care.
Therefore, the Alpha–1 Foundation has established a policy on research data sharing by investigators supported by Alpha–1 Foundation-sponsored grants and contracts. Under this policy, investigators are expected to make their research data available to the scientific community in accordance with applicable privacy and confidentiality guidelines for subsequent analyses and use.
Grant and contract applications must include a data sharing plan that addresses the following questions:
- What data will be shared?
- Who will have access to the data?
- How, where and when can the data be accessed?
- If there is no plan to share data, what is the justification?
It is up to the investigator to decide how his/her data will be shared. However, the Alpha–1 Foundation recommends the use of its Biomaterials Exchange service as a resource. Sharing of materials and data is not limited to agents, experimental animals, vectors, cell lines, tissues and genomic data, but also includes phenotypic information on human subjects. All data should be de-identified, that is, free of identifiers that would link samples or data to individual research participants.
Sharing data may not always be feasible, appropriate or useful. For example, studies with very small samples or those collecting particularly sensitive data should be shared only if stringent safeguards exist to ensure confidentiality and protect the identity of subjects. Similarly, there might be a need to protect intellectual property and there might be restrictions on data sharing imposed under agreements with third parties. If such or another reason for not sharing data applies, the application must include an explanation.