Research Data on People with ID: How FA(I)R are we?

H. Tobi, Joep Tummers, C. Catal, B. Schalk, G. Leusink, B. Tekinerdogan

Research output: Contribution to journalAbstractAcademic


Introduction: FAIR is the acronym of the four data‐principles Findable, Accessible, Interoperable and Re‐usable. These principles have been developed to enhance optimal use of research data and are also considered to reflect the usefulness of big data for research. What is the impact of FAIR principles in research on people with ID? What are possible gains and losses of not/using these principles?

Methods: A systematic review of the literature was done to investigate the use of the FAIR principles in research on people with ID. A deductive coding scheme was applied and keywords given in bibliographic data bases were used to compare subdomains. Possible reasons for patterns found will be explored by means of a critical narrative review.

Results: The FAIR principles appear to be mainly adopted by researchers in genetics. Despite a more general call for sharing data, this appears to happen less frequently in other subdomains.

Implications: The (lack of) adoption of FAIR principles has consequences for the direction and (amount of) progress made in science and care for people with ID. Identified reasons for (not) adopting the FAIR principles need further discussion and creative problem solving.
Original languageEnglish
Pages (from-to)854-854
JournalJournal of Intellectual Disability Research
Issue number7
Publication statusPublished - Jun 2019

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