Year: 2021
Type: article
Abstract: For Spectrum 10K, the time from launch to limbo was less than three weeks: An online outcry from autistic self-advocates forced the researchers behind the effort -the largest autism genetics study to date in the United Kingdom -to pause their project indefinitely in September.This month, a second study -on an early intervention to lessen autism traits -faced a similar backlash after publication, with a group of autistic self-advocates attacking the paper online and petitioning the study's authors to meet with them about their concerns.In both cases, the research teams responded swiftly, with apologies and acceptances to engage in a dialogue with the protestors.But the incidents have prompted some scientists to wonder how social media pressure may shape autism science going forward."I think everyone has" been paying attention, says Maria Chahrour, assistant professor of genetics and neuroscience at the University of Texas Southwestern Medical Center in Dallas.Criticism of researchers' priorities and methods from the autistic community is nothing new, several scientists who spoke with Spectrum say.What may be changing, however, is the ability of autistic self-advocates to air their concerns so quickly and publicly.Within two weeks of Spectrum 10K's launch on 24 August, a "Boycott Spectrum 10K" page, related Facebook group and petition had already voiced a number of concerns about the study.Chief among them: that the study required participants to consent to their genetic data being
Source: The Transmitter
DOI: 10.53053/zqij5133
Authors: Angie Voyles Askham, Laura Dattaro
Language: English
Subfield: Cognitive Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: bronze
OpenAlex ID: W3207806485