Prenatal Screening for Autism is an Ethical Dilemma

In2021, the Autism Research Centre at the University of Cambridge announced Spectrum 10K, a plan to collect and analyze the genomes of 10,000 autistic people. The stated aim was to understand diversity among autistic people, including why some have conditions like epilepsy and ADHD, and to develop more personalized ways to help each autistic individual. Wary of potential criticism, members of the study <a href="https://www.cam.ac.uk/research/news/10000-autistic-people-to-take-part-in-the-uks-largest-study-of-autism" rel="noopener ugc nofollow" target="_blank">wrote</a> on their website, “The Spectrum 10K team views autism as an example of neurodiversity and is opposed to eugenics or looking for a cure for preventing or eradicating autism itself.” Nevertheless, criticism came. David Gray-Hammond, an autistic consultant and the author of The New Normal, heard about the project and helped assemble a group called Boycott Spectrum 10K. Together they wrote a <a href="https://emergentdivergence.com/2021/09/05/collective-joint-statement-from-autistic-people-on-spectrum-10k/" rel="noopener ugc nofollow" target="_blank">statement</a> outlining their concerns, including fears that the research could lead to prenatal testing and abortions. They gathered signatures and sent it to the Health Research Authority, the U.K.’s regulator for medical studies. They also demonstrated outside the Autism Research Centre, holding signs that said, “AUTISTIC PRIDE” and “HANDS OFF OUR DNA.” “The atmosphere was definitely one of anger that we were being ignored, but solidarity that we were there together defending ourselves and our community,” Gray-Hammond says. Amid the outcries, including from activists within the community known as “autistic self-advocates,” the Autism Research Centre stopped recruitment and data collection. Less than three weeks after announcing the initiative, its director posted an apologetic <a href="https://spectrum10k.org/statement-10th-september/" rel="noopener ugc nofollow" target="_blank">letter</a> to the study’s site announcing a pause. <a href="https://medium.proto.life/prenatal-screening-for-autism-is-an-ethical-dilemma-b944e095e7b1">Click Here</a>