The National Autistic Society (NAS) will be writing to researchers involved in a new autism study after concerns were raised about the nature of the consent, the collection of DNA samples and how this could be used in the future.
The Spectrum 10K study was launched recently by a team of researchers at the University of Cambridge, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA).
Its aim is to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families.”
The NAS say that research to improve support for autistic people is vital. However, they are not involved in this project as an organisation and declined to participate.
It said: “We know it is proving divisive and that many autistic people and some researchers have serious concerns and questions, particularly about the nature of the consent, the collection of DNA samples and how this could be used in the future.
“We are writing to the Spectrum 10K research team to raise these important concerns. We note that Spectrum 10K have recognised that there are concerns and promised to provide more information on their website in the future.
“We strongly encourage autistic people and parents considering taking part to look into this study carefully, and consider the potential benefits and harms, before deciding whether or not to participate.”
The charity says that research is vital but it should be focused on how best to support autistic children and adults with the biggest challenges they face as for many years, autism was mis-characterised as a disease or illness, and something to be cured.
Despite much better understanding today, and the efforts of autistic people themselves, this attitude has not disappeared entirely.
The NAS added: “Society and researchers still have a long way to go to fully earn the trust of all autistic people. Researchers must make sure autistic people are meaningfully involved at every stage of the research process, respond to their feedback and make sure that all involved know exactly how their input will be used.”
