Rogue researchers managed to access genetic data from 20 000 American children, which they used to do bogus “race science” research, fuelling concerns that the US National Institutes of Health (NIH) doesn't adequately protect sensitive data, according to an explosive report in The New York Times.
The Adolescent Brain Cognitive Development (ABCD) Study is a decade-long endeavour tracking children’s brain development that aims to give insight into the impact of DNA on behaviour and disease.
But, reports Medpage Today, a group of fringe researchers gained access to these data and used the information to produce at least 16 radical papers purporting biological differences between races, among other racist conclusions.
The papers have stoked white nationalist fires online and have been considered in artificial intelligence responses to queries.
“It’s evil,” said Terry Jernigan, PhD, national co-director of the ABCD Study and a neuropsychologist at the University of California-San Diego.
“It’s not just that the science is faulty, but it’s being used to advance an unethical agenda.”
This isn’t the only instance of the NIH’s safeguards failing to protect sensitive genetic data – or even the ABCD study.
According to The New York Times article, there have been at least 63 instances of the NIH’s genomic data being improperly released to researchers, and ABCD data were also improperly obtained by an unidentified researcher in China who faked an affiliation with an American university.
The New York Times article dug into the history of the researchers behind these sinister “race science” studies, and how they obtained the data, and were told by one of them that the NIH data were vulnerable because “our scientific institutions sort of assume good faith in people”.
There has been no official public accounting of how the NIH lost control of the children’s genetic information.
The Chronicle of Higher Education in 2022 reported on the mishandling of data from another child brain study by the same American professor, Bryan J Pesta, who also obtained the ABCD information. But details about the subsequent loss and abuse of the ABCD data have not been previously reported.
Today, the data continue to be twisted to advance ideological agendas.
Scientists said the unauthorised use of the data underscored the need for stronger controls.
In a statement, Lyric Jorgenson, Associate Director of science policy at the NIH, said the agency had taken steps to protect the ABCD Study. It has introduced a new online portal requiring users to complete training on responsible data use and to “pass a knowledge test prior to accessing the data”.
But the Government Accountability Office, a federal watchdog, reported last April that the NIH did not have the resources to properly monitor all the downloads of genetic data and “may be missing violations that go unreported by researchers”.
More harm than good
The scientists leading the ABCD Study decided not to tell participants that their data had been misused for race research.
Parents and their children, who are now adults nearing the end of the decade-long study, reacted with surprise and dismay when The Times told them what had happened. They said they deserved to learn about it from the study’s organisers.
They said no one had told about the misuse of the information and they would never have agreed to participate had they known it could be used to promote racial division.
Scientists said they chose not to inform the families because they believed doing so could cause more harm than good.
“We have struggled with the decision,” said Angela Laird at Florida International University, who helps run the ABCD Study in South Florida.
Many of her study participants are black and Hispanic and “are really the targets of these racist studies”, she said. “I do believe that if we sat our families down and read them the studies, they would be upset, and in many cases, that is probably an understatement.”
Medpage Today article – 20,000 Kids' Genetic Data Misused for 'Race Science' (Open access)
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