From the Directors of the ABCD Study Coordinating Center: Sandra A. Brown, University of California, San Diego (UCSD); Terry L. Jernigan, UCSD; Hugh Garavan, University of Vermont; Susan F. Tapert, UCSD; Lucina Q. Uddin, University of California, Los Angeles
The researchers conducting the Adolescent Brain Cognitive Development (ABCD) Study agree with the idea that embedding ethicists in neuroscience research programs is essential for ensuring the protection of research participants. The study’s inclusion of ethicists since project conception and onset has greatly enhanced the protocol design and participant experience. Our study includes an internal bioethics and medical oversight advisory group, as well as an independent national observational safety monitoring board focused on adhering to biomedical ethics principles, developing guidelines for identifying and responding to potential risks (including responsible use of ABCD data), and ensuring standards of accountability and integrity for researchers. Embedding ethics-focused workgroups in ABCD has produced a substantial number of publications to guide responsible use of open science data, as well as examples of responsible data use for neuroscience-focused publications.
Despite these ethical guardrails, data analytic and interpretive misuse can occur when researchers misrepresent their intentions and violate the terms of the data use agreement by using data for purposes not described in the approved application. For more details, please view the ABCD Study’s statement on open science. Although the specific publications referenced in the New York Times article did not include any ABCD data, cases of data misuse are always troubling, especially when misinterpreted results can fuel harmful and inflammatory statements targeted at marginalized communities. On the other hand, many carefully conducted peer-reviewed publications using ABCD data have highlighted the nuanced associations amongst socioeconomic factors and childhood adversity, with multiple mental health, cognitive and brain developmental outcomes. As the ABCD Study continues beyond the 10-year mark, we will continue to recommend strict National Institutes of Health data access policies and standards, and ethically responsible use of ABCD data when conducting science toward our goal of improving people’s lives.