Details of an upcoming Cambridge research project looking to investigate how hormone levels in the womb “affect the development of autistic traits” have been shared online this week, sparking concerns from autistic advocates the study will contribute to the development of a “pre-natal test” for their condition.
Information about the study from the Autism Research Centre, which continues to face criticism over its controversial Spectrum 10K project, was shared by autistic mental health and addiction advocate David Gray-Hammond on his blog Emergent Divergence on Sunday.
A screenshot of an email, regarding a focus group for the study, reads: “The Autism Research Centre (ARC) at the University of Cambridge is planning a study to explore whether differences between male and female foetuses can help to predict how infants will develop.
“We hope that this study will, among other things, help work out how hormone levels in the womb affect the development of autistic traits.”
An ARC spokesperson confirmed to Liam O’Dell that the study would involve the use of amniocentesis, a controversial process whereby a small sample is taken of cells in the liquid surrounding the womb – known as amniotic fluid – and analysed for genetic conditions.
The procedure involves the use of a needle injected into the sac containing the unborn child – a procedure which carries the risk of infection and a one in 200 risk of miscarriage, according to the NHS.
In addition to potentially identifying conditions such as sickle cell, cystic fibrosis and spina bifida, amniocentesis can also reveal whether a child has Down’s Syndrome – which has ignited contentious debates around abortion, ethics and disability.
Commenting on the message, Mr Gray-Hammond wrote: “It highlights an issue where disabled people are viewed as less-than human and as a drain on resources and parental wellbeing. We are told it is a kindness to prevent the birth of disabled people because we have been conditioned into believing that disability is a tragedy.”
He also alleged the project has “one logical conclusion” in the form of developing a “pre-natal test for autism”.
In a statement to Liam O’Dell, the ARC confirmed it was currently designing a data-sharing policy in partnership with autistic people for an “upcoming aminocentesis study” which will be “independent of and will not share any data with” the Spectrum 10K project.
“This study will explore sex differences in early infant brain development. Only pregnant people who have been prescribed amniocentesis by the attending physician will be asked to take part.
“They will not be recruited based on autism family history and will not be assessed for clinical autism as part of this study.”
“We have been studying amniotic fluid for over 20 years, but we are not attempting to develop a prenatal test for autism. The ARC is not and will never be attempting to create such a test, because it could be used to prevent autistic people from being born and we believe that would be morally wrong,” it said.
The ARC went on to add it was “taking steps” to protect data collected in this new study from being used for the purposes of prenatal testing “by any other organisation”.
It continued: “This data policy is not finalised but will include a review process where requests for access will be scrutinised by both researchers and autistic people to ensure that it is never used for harmful purposes.
“The study is committed to transparency and full details will be published on the ARC website once the current engagement process is complete.”
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