D5.2 Data access protocol for DBSS data, linked to survey data, conforming FAIR principles (Access to biomedical data)

This report is the result of a task which focuses on the legal, ethical, and technological issues of access to biomedical data and aims to make such data available to the research community in accordance with the FAIR principles.

Specifically, the deliverable documents a data access plan for achieving this availability for biomarker data from dried blood spot samples collected by the Survey of Health, Ageing and Retirement in Europe (SHARE). The procedure will be of interest to researchers, survey methodologists, and data archives providing biomedical data collected in survey settings.

The deliverable provides all the relevant background information and preparatory steps for making biomarker data accessible following the FAIR principles. This information includes a summary of the process of implementing the DBSS collection in SHARE, a description of the structured validation experiment carried out to identify the possible effect of varying fieldwork conditions on the values measured in DBSS, and an overview of the way in which SHARE data in general adhere to the FAIR principles.

The report concludes that while dried blood spot samples (DBSS) need specific consideration in terms of data privacy and ethical requirements, users can access and download the DBSS data in the same way and under the same conditions as the regular SHARE data - that is, without the need for an extra user statement to be signed. It is expected that this easy access to the DBSS data will increase data re-use.