Lack of family understanding for sharing genomic data on HeLa cells
This cell type could lead to a cell division that is unlimited in human cells, aka an eternal lifespan.
Dr. Collins said that the sequencing and publication of the HeLa Genome brought to light important ethical and political issues. We met the family three times in four months to understand their perspective. We came to a decision that respected their wishes while allowing science to advance. \”We are grateful to the Lacks Family for their generosity and thoughtfulness.\”
The HeLa Genome Data Use Agreement
The new policy of controlled access for HeLa cells’ full genome sequences will allow the Lacks family to be involved in the work done on the HeLa genomes and keep track of any discoveries that result. Biomedical researchers will be able, under the new policy, to request access to full genome sequences from HeLa cells if they agree to abide the terms of the HeLa Genome Data Use Agreement. Two members of the Lacks Family will join the newly formed six-member NIH working group, which will be reviewing proposals for accessing the HeLa genome sequence data. Researchers funded by NIH who produce full genome sequences from HeLa cells are also expected to deposit the data in a database that will allow future sharing. The database study page will be accessible after the embargo lifts at this url: http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?s…0640.v1.p1. The family’s wishes will be respected and other investigators are encouraged to do the same. Researchers who generate or use full genomic data from HeLa cell lines will be required to acknowledge and express gratitude to the Lacks Family in their publications.
Source:
https://www.nih.gov/news-events/news-releases/nih-lacks-family-reach-understanding-share-genomic-data-hela-cells
