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 最新麻豆视频 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鈥 contribution to and her family鈥檚 continued support of biomedical research, NIH also has a that serves as a transparent, accessible resource to the public, scientific researchers, and the Lacks鈥 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 . As we enter our second decade of partnership with the Lacks鈥 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鈥 descendants who will continue to shape how we honor her legacy. As Mrs. Lacks鈥 family notes:

鈥淎ugust commemorates a decade since our family and the 最新麻豆视频 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鈥 legacy and continuing our partnership with the 最新麻豆视频 to assist respectfully in propelling science and technology forward.鈥

The willingness of the Lacks family to partner with NIH on this important issue shows what a remarkable family they are.听 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