Study earns ‘expression of concern’ - unavailable data

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Joined: 25 Aug 2013
Age: 64
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03 Sep 2021, 6:15 am

Spectrum news

Last month, the journal PLOS ONE added an editorial “expression of concern” to an autism brain imaging study it published seven years ago, following a dispute over access to the study’s materials and raw data.

For the study — which has been cited 138 times, according to Clarivate Analytics’ Web of Science — researchers used electroencephalography (EEG) to record brain activity in 20 autistic people and 20 non-autistic people as the participants listened to an audio clip in which the same syllables were repeated in a happy, angry or neutral voice.

Non-autistic people showed large changes in brain activity when listening to emotional speech sounds, the study reported, but people with autism did not, suggesting that they have difficulties in recognizing vocal emotions. “All data underlying the findings are fully available without restriction,” the researchers wrote in 2014.

But since then, the investigators have not shared their EEG data or the auditory stimuli used to collect those data with other researchers. The denial not only contradicts the researchers’ original statement but also violates the journal’s policy.

PLOS ONE published the expression of concern on 16 August after “a reader contacted PLOS after experiencing difficulties in obtaining access to the raw underlying data and stimuli data,” says David Knutson, senior manager of communications at PLOS ONE.

That reader’s message prompted the journal’s editors to follow up with the researchers, who “stated that they were unable to share the raw data underlying their study due to data-sharing restrictions imposed by the Institutional Review Board in the ethics approvals and consent forms for this study,” Knutson says. “This restriction is recognized by PLOS, but authors should make these limitations clear in their data availability statement at the time of submission.”

The researchers shared a processed EEG dataset, which could only be used to replicate the paper’s statistical analysis. The researchers also told the journal that they had patented the auditory stimuli and thus could not share them publicly, according to the editorial note.

It’s not uncommon for researchers to not make their raw data available, and there can be a lot of reasons for that,” such as research dealing with sensitive matters, says Mark Rothstein, professor of law and medicine and director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine in Kentucky, who was not involved with the study.

Many journals and funding agencies, such as the U.S. National Institutes of Health, do not require that data be publicly shared, but that agency has announced new data-sharing guidelines scheduled to go into effect in 2023.

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman