The Scientist - USA (2022 - Spring)

CAREERS

MODIFIED FROM © ISTOCK.COM, ELIZALIV, ELENABS

L

ate last August, autism researcher

and clinical psychologist Simon

Baron-Cohen announced the start of

an ambitious new study called Spectrum

10K. In media interviews, he described

his vision to collect saliva samples, medi-

cal information, and behavioral surveys

from 10,000 autistic people and their

families to better understand the condi-

tion’s genetic and environmental under-

pinnings. To recruit such a large cohort—

the biggest in the UK’s history, according

to Spectrum 10K’s website—the project

required “an unusually well-publicized

launch,” Baron-Cohen tells The Scientist

in an email. Over the next few weeks, a

team of ambassadors, many of whom had

either been diagnosed themselves or were

caregivers to autistic children, touted the

study’s mission. Among them were televi-

sion celebrities and a former president of

the Royal Society, who helped bring the

project into the public eye.

These appearances painted a picture

of a new era of autism research, but that

vision wasn’t embraced by all. Kieran Rose,

an autism advocate who had himself been

diagnosed by Baron-Cohen years before,

wrote about the “shock and initial trauma”

felt by many in the community following

the announcement. “Over the course of

that day, reading through all that informa-

tion, you realize it was all really woolly—

there [were] no real aims or outcomes for

it, there was no real identifiable benefit to

anybody,” Rose tells The Scientist.

Rose, along with several autism schol-

ars, advocates, and support groups, formed

Boycott Spectrum 10K, while a sepa-

rate petition calling for the project to be

halted collected more than 5,000 signa-

tures. The boycotters’ concerns, outlined

in an open letter posted online last Sep-

tember, include researchers’ failure to con-

sult with patients and alleged obfuscation

of the study’s objectives and data privacy

protocols. Some people oppose the study

because they fear that genetic information

could be used to “cure” autism or to develop

prenatal screenings. The people behind

Spectrum 10K, its detractors note, haven’t

been clear about how the project will avoid

this misappropriation of genetic informa-

tion, nor how the research will improve the

well-being of participants. These issues,

Rose says, could have been avoided had

the Spectrum 10K team consulted with

patients from the beginning. (On its site,

Spectrum 10K mentions an advisory panel

that includes autistic adults and parents of

autistic children, and Baron-Cohen says

that this panel was consulted in the years

prior to the study’s launch.)

These concerns spread fast. Autism

groups that had initially supported the

project rescinded their cooperation, and

protests sprang up outside of participat-

ing facilities. Only weeks later, Spectrum

10K’s organizers released an apology to the

community and announced that they were

voluntarily pausing further recruitment as

they worked to address the criticisms. The

UK’s Health Research Authority (HRA)

has since stepped in to investigate con-

A new wave of research is recruiting patients and other members of the public to serve as

equal partners, bringing fresh perspectives to the study of diseases and other conditions.

BY AMANDA HEIDT

Partnering with the Public

72 THE SCIENTIST | the-scientist.com