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HeLa Genome Data Sharing Approved by Family

Science Ethics: Improving

From WikimediaThe family of Henrietta Lacks met with Francis Collins and other representatives of NIH at Johns Hopkins. The discussion resulted in an agreement for data sharing of the complete HeLa genome.

For many years the family felt that they had not been consulted, the cells had been taken without permission, and that their privacy rights were not considered. The HeLa cells, taken from cancer cells of Henrietta Lacks have been used in laboratories all around the world and been instrumental in much cellular research.

The ethical issues were brought to the public’s awareness by Rebecca Skloot in her book, “The Immortal Life of Henrietta Lacks“.

Reference:
Science Insider August 7, 2013