SSHOC has published a new report which documents a plan to achieve FAIRness in biomarker data from dried blood spot samples collected by The Survey of Health, Ageing and Retirement in Europe (SHARE).
D5.2 Data access protocol for DBSS data, linked to survey data, conforming FAIR principles is the work of Luzia M. Weiss of SSHOC partner SHARE ERIC. The Survey of Health, Ageing and Retirement in Europe (SHARE) is the largest pan-European social science panel study of its type and investigates individual, economic, health-related, and social impacts of the aging process in order to shed light on the implications of population aging for individuals and society as a whole.
Dried Blood Spot Samples as an Objective Measure of Health
The SHARE database includes indicators such as individual grip strength, peak expiratory flow, walking speed, and chair stand. On the basis that they can help to identify pre-disease physiological processes which are below the threshold of an individual’s perception, it was decided in 2015 to collect dried blood spot samples (DBSS) as an additional objective measure of health. Eleven European countries and Israel participated.
Intrinsic Differences between Biomedical DBSS and Traditional Self-reported Survey Data
Unlike traditional self-reported survey data, DBSS and other biomedical data must often be extensively processed, validated and calibrated before they can be made available for analysis using the statistical techniques and models common in the Social Sciences and Humanities. While survey data are usually available directly after data collection, the inclusion of biological samples into the database requires an additional step, the laboratory analysis of the samples.
This special character of the DBSS data required a review of the general SHARE Data Access Plan and its compliance with FAIR principles. The procedures adopted and described in the report will be of interest to researchers, survey methodologists, and data archives providing biomedical data collected in survey settings.
Structure of the Report
The report 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 dried blood spot samples (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.