Dear ABCD Participants & Parents,
The New York Times has published an article about misused data from the ABCD Study and other studies by a group who used the data to promote a specific agenda on race differences that is rejected absolutely by the ABCD consortium. ABCD is designed to advance rigorous, ethical research and strongly opposes any discriminatory stigmatizing or harmful uses of the data.
ABCD appreciates that learning of this through the above article may have been confusing, upsetting, and disappointing. Although we do not control how the data are used by other scientists, ABCD condemns this and similar misuses of the study data. We have heard that some of you were dismayed we had not alerted you earlier. In this letter, we provide information and clarify some misunderstandings that might arise from the Times article.
Importantly, none of your personally identifiable information was released. The data obtained and misused by a group of individuals has no links to personally identifiable information about you (like names, address, phone number, birthday).
What happened?
ABCD study data (without identifiers) can be accessed by approved researchers. Data access is managed by our sponsor, the National Institutes of Health (NIH). In this case, the individual gave misleading information when applying to use the data and gained access. The applicant and his collaborators violated terms of the agreement. When misuse was discovered, NIH swiftly notified his institution. An investigation confirmed the misuse. This led to NIH revoking his access and he was told to delete all ABCD data in his possession. The objectionable articles were not published by standard, respected scientific journals, but did appear in social media and blog posts.
With your help, the ABCD Study has now published over 1700 peer-reviewed research articles in respected scientific journals. These publications have served as intended by ABCD to provide valuable insights into youth mental health, physical health, and brain development. These scientific findings are being used by reputable scientists to further our understanding of youth health and development. They are highly cited by many scientists worldwide, receive positive media attention, and are used by educators, clinicians, policy makers, parents, and young people to understand social, environmental, and cultural influences on adolescent development. There is strong, broad interest in the ABCD Study.
What steps did ABCD take?
ABCD became aware of these misleading interpretations of the data when a concerned researcher told us about posts on a social media platform. ABCD took a series of actions including: checking if publications were in peer reviewed journals, bringing the issues to journal editors, and publishing a series of guidelines for responsible data use in high quality journals (https://www.nature.com/articles/s41593-024-01608-4, https://onlinelibrary.wiley.com/doi/10.1111/ejn.16662, and https://pubmed.ncbi.nlm.nih.gov/38924835/).
Why didn’t ABCD notify ABCD families about the activities of this group?
At the time of these events, our focus was to do no harm. We consulted with a number of experts to decide how best to limit exposure to these incorrect reports and interpretations. We were concerned that discussions of these problematic reports could bring unneeded distress to youth and parents in the study. We also wanted to avoid amplifying unethical and erroneous material. ABCD does not include such reports on our website listing. Our consortium made these decisions to avoid giving a stronger platform to these hurtful and inaccurate reports.
What has changed to prevent this from happening again?
Since this data misuse occurred, NIH created a new platform to store and share ABCD data called the NIH Brain Development Cohorts Data Hub, which has a stricter process for researchers to access de-identified data. Data may only be stored and processed on highly secure computers that meet very strong security guidelines. Scientists seeking to use ABCD data must undergo training on responsible use of data, be at an accredited institute or university, and must not have committed previous data misuse or scientific misconduct. When NIH learns of data misuse, they take immediate action by discontinuing the offender’s data access and banning them from future access.
Our Ongoing Commitment to You
ABCD uses infographics, webinars, and social media to highlight the important, rigorous research made possible by your ABCD participation, to let you know how your contributions as ABCD participants inform our understanding of issues affecting youth. We will continue to disseminate findings from high quality studies to you, while working with our NIH partners to further ensure responsible use of ABCD study data going forward.
While in a very limited number of cases data have been misused, no personally identifiable information was released. We hope this information about our efforts to protect your data are helpful. Unethical activity and misuse of the ABCD data are not acceptable and we will continue to take action to prevent it. We welcome a continued dialog about these issues. Feel free to reach out to the Principal Investigators at your site or the ABCD Coordinating Center with questions and comments.
We appreciate the trust you and your family have placed with us. We hope that we have been able to reassure you of our commitment to keep your information safe and used in ways that improve youth health.
Sincerely,
The ABCD Study Principal Investigators:
- University of California, San Diego (PIs: Susan Tapert, PhD; Joanna Jacobus, PhD): abcd@ucsd.edu
- Children’s Hospital of Los Angeles (PIs: Elizabeth Sowell, PhD; Megan Herting, PhD): abcd@chla.usc.edu
- Florida International University (PIs: Raul Gonzalez, PhD; Angela Laird, PhD): ABCD@fiu.edu
- Laureate Institute for Brain Research (PIs: Martin Paulus, MD; Robin Aupperle, PhD): abcd@laureateinstitute.org
- Medical University of South Carolina (PIs: Kevin Gray, MD, Lindsay Squeglia, PhD): abcdstudy@musc.edu
- Oregon Health and Science University (PIs: Bonnie Nagel, PhD; Damien Fair, PhD, PA-C; Rebekah Huber, PhD): abcd@ohsu.edu
- SRI International (PIs: Fiona Baker, PhD; Eva Muller-Oehring, PhD): abcd@sri.com
- University of California, Los Angeles (PIs: Susan Bookheimer, PhD; Mirella Dapretto, PhD): abcdstudy@mednet.ucla.edu
- University of Colorado (PIs: Marie Banich, PhD; Naomi Friedman, PhD): abcd@colorado.edu
- University of Florida (PIs: Linda Cottler, PhD, MPH; Sara Jo Nixon, PhD): abcd@health.ufl.edu
- University of Maryland, Baltimore (PIs: Linda Chang, MD; Thomas Ernst, Ph.D.): abcd@som.umaryland.edu
- University of Michigan (PIs: Mary Heitzeg, PhD; Chandra Sripada, MD, PhD): abcdmichigan@umich.edu
- University of Minnesota (PIs: Monica Luciana, PhD; Sylia Wilson, PhD): abcd@umn.edu
- University of Pittsburgh (PIs: Duncan Clark, PhD, MD; Beatriz Luna, PhD): abcd@upmc.edu
- University of Rochester (PIs: John J. Foxe, Ph.D.; Edward Freedman, Ph.D.): ABCD@urmc.rochester.edu
- University of Utah (PIs: Deborah Yurgelun-Todd, PhD, Perry Renshaw, MD, PhD, Erin McGlade, PhD): abcd@utah.edu
- University of Vermont (PIs: Hugh Garavan, PhD and Alexandra Potter, PhD): abcd@uvm.edu
- University of Wisconsin – Milwaukee (PIs: Krista Lisdahl, PhD; Christine Larson, PhD): abcduwm@gmail.com
- Virginia Commonwealth University (PIs: James Bjork, PhD; Michael Neale, PhD): abcd@vcuhealth.org
- Washington University St. Louis (PIs: Deanna Barch, PhD; Andrew Heath, DPhil; Pamela Madden, PhD): abcd@wustl.edu
- Yale University (PIs: Arielle Baskin-Sommers, PhD; Dylan Gee, PhD; BJ Casey, PhD): ABCD@yale.edu
- ABCD Coordinating Center (PIs: Terry Jernigan, PhD; Sandra Brown, PhD): abcd-cc@ucsd.edu
- Data Analysis, Informatics, & Resource Center (PI: Anders Dale, PhD)