Baltimore Family Gets Rights to Privacy of ‘Immortal Cells’
The family of Henrietta Lacks, who are currently living in Baltimore, Maryland, have finally got a say in how the cancer cells extracted from Ms. Lacks way back in 1951 after her death, get used. Ms Lacks was an African-American tobacco farmer who died of cervical cancer. Not long after her death her cancer cells were extracted for reaserch purposes, they were discovered to be living in lab conditions indefinitely, which is generally not possible. Since then the cells have been sent around the world for research purposes and scientists call the cells -"HeLa."
HeLa cells have contributed immensely to medical science in the study of cancer, vaccines and cell biology et al with tens of thousands of studies based on them. The family of the deceased neither knew of the studies nor of the contributions, until 1973 when a scientist contacted them for some blood samples. The HeLa cells have immensely helped the multi-billion dollar biotech industry, but the family has not received a single cent of the money made by companies that benefitted from the research based on HeLa cells.
This changed recently when The National Institute of Health (N.I.H) reached an agreement with the family giving them a say as to how the HeLa cells will be used and what gets released in the public domain. The family, however, will receive no monetary benefit as per the agreement. This comes after German researches published the genome of a line from the HeLa cells and put it in the public domain by allowing its download. The data has since then been taken down from public domain.
The case of the family was highlighted by Rebecca Skloot in her much acclaimed debut book - "The Immortal Life of Henrietta Lacks." She also took part in the negotiations for the family with The National Institute of Health. The agreement allows two family members to be a part of a working group in the N.I.H who will review applications made by scientists to study the HeLa cells data available in the Institute's database.
This episode underlines the need for governments across the globe to take notice and enact laws to protect citizens' right to privacy from companies/scientist who take the cells of the people without their consent.