Dear HBCD Participant,

Greetings from your HBCD study team. We deeply appreciate your participation in the study and we wanted to share some important information with you.

We are writing to remind you that the HBCD study shares the information we collect (data) with other researchers authorized by the National Institutes of Health (NIH). These data are “de-identified.” That means the data do not include details that could directly identify you or your child, such as name, contact information, birthdate, address, or study visit dates. To access the study’s data, researchers and their employers sign a contract. In the contract, they agree to rules for using the data.

Sharing data makes your study participation more impactful. When many responsible scientists can use HBCD’s de-identified data, they can quickly discover new knowledge about children’s health and development. From time to time, we’ll update you on discoveries and breakthroughs made possible by HBCD data.

There is another NIH study called the Adolescent Brain and Cognitive Development study (ABCD). ABCD is similar HBCD, but ABCD involves older children. Early this year, the New York Times reported that a researcher improperly obtained data from the ABCD study. The researcher did not obtain names or other information that could directly identify a participant. That researcher and a handful of others misused the ABCD data to promote a specific agenda on race differences. HBCD and ABCD investigators absolutely reject that work as scientifically and morally wrong. Sadly, that misuse also takes attention away from the thousands of researchers who properly and responsibly used ABCD data to advance science.

The unethical research did not include any data from HBCD. However, we understand that you might worry your data could be potentially misused in the future. To help prevent misuse, the NIH has recently changed the way data can be accessed. They now have a very secure internet “data hub” for sharing de-identified data from HBCD and ABCD with other researchers. The new hub uses strong security. Also, before it authorizes scientists to use the data it checks whether they have misused data or committed scientific misconduct in the past. It also requires education in responsible use of data for all data users. However, even with strong protections, there is a very small chance that unethical people could misuse or misrepresent HBCD’s data.

Please know that your HBCD investigators and NIH are actively working on new ways to prevent and respond to potential misuse of data. If you ever hear something about HBCD that troubles you, or if you have questions about anything in this letter, please contact your site.