August 24, 2023

10 years in, NIH-Lacks Family partnership holds strong

This August marks 10 years since the launch of a landmark partnership between the National Institutes of Health and descendants of Mrs. Henrietta Lacks. Through the 2013 NIH-Lacks Family agreement, NIH continues to honor the preferences of the Lacks family while responsibly advancing scientific discovery. Over the past decade, 90 researcher requests have been approved for controlled access to HeLa cell whole genome data and researchers have deposited 14 HeLa cell genome sequences in NIH's database of genotypes and phenotypes (dbGaP). To honor Mrs. Lacks’ contribution to and her family’s continued support of biomedical research, NIH also has a dedicated website that serves as a transparent, accessible resource to the public, scientific researchers, and the Lacks’ family that is in keeping with the spirit of this historic agreement.

The NIH-Lacks Family Agreement has not only endured but has thrived over the course of a decade, illustrating that data sharing and respect for participant autonomy can be achieved. The lessons learned from these conversations continue to inform and shape our approach to policies and practices today, evidenced by the important considerations built into the NIH Data Management and Sharing Policy. As we enter our second decade of partnership with the Lacks’ family, NIH intends to reinvigorate our efforts to make the research community aware of our expectations and find new ways to advance our collective success. At the centerpiece of these efforts will be the ongoing engagement of Mrs. Lacks’ descendants who will continue to shape how we honor her legacy. As Mrs. Lacks’ family notes:

“August commemorates a decade since our family and the National Institutes of Health have been in a momentous partnership. As we honor our beloved Henrietta Lacks and her many contributions to science, we remain mindful of her story. This monumental partnership has signified our inclusion and helped shape our vital role in data sharing. We are committed to upholding our beloved Henrietta Lacks’ legacy and continuing our partnership with the National Institutes of Health to assist respectfully in propelling science and technology forward.”

The willingness of the Lacks family to partner with NIH on this important issue shows what a remarkable family they are.  We are extraordinarily grateful for their continued commitment and support in advancing the health and well-being of people across the globe.

Lawrence A. Tabak, D.D.S., Ph.D.
Acting Director, NIH