Contributing to an autism biobank: Diverse perspectives from autistic participants, family members and researchers.
Rozanna Lilley, Hannah Rapaport, Rebecca Poulsen and 2 others
PMID 37882180WHAT IT FOUND
Families and researchers contributing to an autism biobank were motivated by a search for causes to alleviate guilt and a desire to help science, but they expressed deep anxiety about data misuse and the trauma of blood draws for autistic children.
Key findings
01Parents often sought a biological cause for autism to dispel stigma and alleviate self-blame regarding their parenting or pregnancy choices.
02The process of collecting biological samples, particularly blood draws, was described as traumatic for autistic children and distressing for their families.
03Participants expressed conflicting views on genetic research, ranging from hope for earlier diagnosis and support to fear that it could lead to eugenic practices or discrimination.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study relied on a single biobank's participants, who had already consented to research, likely biasing the sample toward those with positive views of biobanking. The interviews were retrospective, with some participants having donated data years prior, which may affect the accuracy of their recall regarding the experience. The sample was predominantly white and of moderate-to-high socioeconomic status, which may not reflect the experiences of more diverse populations.
Declared interests
One author (RP) was a member of the Biobank Access Committee and was employed by the Autism CRC as the Biobank Project Manager. The study was supported by the Cooperative Research Centre for Living with Autism (Autism CRC) and the Australian Government’s Cooperative Research Centres Program.
The easy way to misread this
Do not interpret these findings as evidence that autism biobanks are harmful or beneficial. The study reports the subjective experiences and ethical concerns of a specific group of participants, not the clinical outcomes of the research itself.