Good open science improves the lives of America’s youth

In the United States, adolescents spend more than one hour a day on social media during school hours. Measures of brain connectivity in childhood can predict future depression symptoms. One in four 9–10-year-olds report having sipped alcohol. These and hundreds of other findings relevant for youth mental and physical health were made possible by the landmark Adolescent Brain Cognitive Development^SM (ABCD) Study, the largest long-term investigation of brain development and child health in the United States.

For the past ten years, over 10,000 youth participants have contributed their brain imaging, cognitive test results, questionnaire responses about physical health, mental health, and everyday activities, hormone samples, genetic data, and much more to help scientists better understand the factors underlying risk and resilience for mental health and substance use disorders. A recent New York Times article reports that scientists involved in conducting the ABCD Study^(R) did not keep these data safe, leading to unethical and unauthorized use by a group of individuals seeking to argue for the innate intellectual superiority of white people. As scientists conducting the study, we want to clarify misleading statements about ABCD in the article and expand on some important open science principles and ethical guardrails that were not fully covered in the story.

ABCD was designed using an open science model, which maximizes the scientific benefits of the data collected by making them available to qualified researchers. It is designed with careful attention to data governance. All data are “de-identified”; this means that personally-identifying information (such as names and date of birth) is never available to data users. Access to the de-identified data is restricted to qualified researchers who must submit proposals, agree to strict data use certifications, and undergo training in responsible data handling and ethical use. Access to ABCD data is administered through National Institutes of Health (NIH) data repositories and governed by federal data use agreements. However, technical safeguards to data access cannot protect against analytic and interpretive misuse.

We were profoundly disturbed and concerned that data intended to enhance the scientific understanding of healthy development in youth were used in ways that promote stigmatizing interpretations. The validity of claims by these authors reported in the New York Times article has been challenged by many scientists who point out that group differences often reflect long- standing differential social and environmental conditions that likely influence mental functions. Research framed to promote racial bias or stigmatization is inconsistent with the ethical principles guiding the ABCD Study and the broader scientific community. This misuse disproportionately harms individuals from marginalized communities.

We did not broadly publicize early reports that some individuals were using ABCD Study data to produce misleading and harmful interpretations because 1) no confidential information was breached, 2) much of the material was posted on blogs or other limited-circulation, non-mainstream venues that do not reflect the standards of the broader scientific community, and 3) we did not want to amplify faulty claims that could cause harm to participants and communities. The issue appeared to involve problematic interpretations rather than a breach of data protections, which we would have immediately reported. We immediately brought the issue to the attention of NIH, multiple journal editors and published a series of guidelines for responsible use of data. What we did not do is give a platform to the unethical and distressing claims made by individuals who had wrongfully gained access to multiple datasets and used them in ways that violated data use agreements. We are actively communicating with families who participate in the ABCD Study to provide clear information regarding what transpired, receive their feedback, and address their questions and concerns. We are also continuing to evaluate how best to communicate about such situations going forward.

The case of data misuse reported in the New York Times involved an individual, Bryan Pesta, who gave misleading information to NIH to obtain ABCD Study data. He then violated conditions of the data use agreement, including using the data for purposes not described in the approved application and sharing it with an unauthorized person. The New York Times article reported that Bryan Pesta published 16 articles that used ABCD data, when in fact no articles using ABCD data were published by him. However, the person with whom Pesta shared data in violation with his agreement did subsequently post materials on social media and limited-circulation or non-mainstream venues, including preprint platforms and outlets that do not reflect the standards of the broader scientific community. NIH has barred Pesta from accessing other study data as well as ABCD data. This misuse of data is highly concerning and inconsistent with the ethical standards that guide this research.

We are proud that the open science model adopted by the ABCD Study has led to over 1800 peer-reviewed research articles in respected scientific journals, providing valuable insights into mental health, physical health, and brain development during adolescence. Unethical activity and misuse of the study data are not acceptable, and our National Institutes of Health sponsors have continued to take actions to help prevent such activity in the future by adding new safeguards to ensure that only qualified scientists are granted data access. They also require anyone accessing the data to complete responsible data use training. This type of training helps scientists understand the ethical implications of their research and the historical inequities that should be carefully considered when interpreting their results. Additional guardrails protecting access to data and emphasizing strict guidelines for data management have recently been put in place.

While technical safeguards like de-identifying data and strictly overseeing data access are necessary in research, they are not enough. Scientists, journal editors, reviewers, and the public all play a role in how research is interpreted and shared, particularly as scientific findings circulate through social media. Without critical review of research output, data can be misused in ways that reinforce biases and ignore social context, causing harm to individuals and more globally by increasing health disparities for the most impacted individuals. Mitigating this harm requires a shared commitment to uphold standards of accountability and ethical responsibility.

As the ABCD Study enters its second decade, we are poised to make increasingly impactful contributions to science and society. Data from ABCD can be used to answer some of the most pressing questions in public health. How does cannabis use affect brain development? How does social media use during adolescence affect adult health and functional outcomes? What social and environmental factors influence mental health? What contributes to a happy and healthy life? Because of data generously provided by the participants of the ABCD Study, we will soon begin to have answers to these and many other questions relevant to today’s youth. While doing this work, we will continue to uphold the highest standards around strict data access policies and ethical use of data. We will not lose sight of our primary mission to conduct science that improves the lives of others.