The EMERALD research group is committed to open research practices. Open research practices include things like preregistering hypotheses and data plans, sharing our materials, and sharing anonymised research data. We believe that open research improves the transparency and robustness of research, which is in the interests of the groups we work with in our projects (see Hobson et al., 2022). In particular, we want our research to support a strong evidence base to help improve the lives of autistic people, and people with Developmental Language Disorder, who are often involved in our work.
However, following a project exploring the views of the autism community with regards to data sharing, we have reflected on our approach to open data. Tools like the Open Science Framework make data sharing very easy, and our anonymised research data on this platform can be immediately accessed by anyone, anywhere in the world. Our project “The views of the autism community on research data sharing practices” highlighted that many in the autism community had concerns that data could be used by secondary research teams to support narratives that were not endorsed in the study that originally collected the data.
We will now therefore consider on a study-by-study basis which studies will have data that we believe can be shared very openly, with limited risks that it could be re-used in a way that is damaging to the autism community, or other communities we work with, and which studies will have “safeguarded” data sharing procedures, where we will share data on request with researchers and organisations where they agree not to use our data to promote narratives which would harm neurodivergent communities. You can see a copy of the agreement we will be asking researchers and those accessing our research data to agree to below. This will come apply to all new projects in the EMERALD lab from November 2024.
If you have any questions about how research data are stored and shared, please contact Dr Hannah Hobson. The lead researcher for a given research project will also be able to discuss with you how the project you took part in/are considering taking part in stores and shares data. Access to data about you specifically is different to the sharing of anonymised datasets, which include data from lots of people. If you want to access the data you specifically have given to a research project, this will depend on the nature of the study you participated in - please contact the research team if you have questions about access to your own data.
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Thank you for your interest in accessing our research data. We ask all people aiming to access our research data to complete the following form. Please note that we reserve the right to refuse to share data where we have concerns regarding the impact of projects/outputs derived from our data on neurodivergent communities.
Please state your aims for your project below (e.g. To examine the correlation between X and Y to inform a new research project; To gather data for a non-academic article in X topic):
Are you a researcher associated with a university or research organisation?
Yes/No
If Yes - Which University/Organisation are you based at?
If No - What is your role?
Who else will be accessing the data? Please list your collaborators on this project.
Please conform the following. In receiving data for secondary analysis from the EMERALD lab, I agree to the following conditions:
a. I will not share the data onwards with other researchers/organisations.
b. The work for which I am using the data cannot be considered to support:
i. Harmful or pathologizing autism narratives
ii. “Cure” or prevention approaches to autism.
c. I confirm that any outputs from using the shared data will be respectful towards autistic people and other neurodivergent groups.