The society of 10,000 commandments got another one added to the list today.
Nature journal presents the details on the ‘deal’ in Deal done over HeLa cell line, but we will summarize them for your convenience.
Science needs standardization. ‘Foot’, the original measure of width, came from the size of foot (or shoe), but the shoe-sizes varied around the world. That turned out to be rather inconvenient. French revolutionaries (yes, the actual revolutionaries) decided to standardize the measure of length in standard metre (meter).
Science of human genetics needs a standard too and that standard cell happened to come from a lady named Henrietta Lacks. Having your cells getting selected for standard that the whole world would abide by for generations should be considered an honor by any reasonable soul. I would have been thankful, if my grandma’s tissues were picked instead. In fact, my mom felt very happy, when I named a noncoding RNA after her.
Enter Rebecca Skloot, a ‘journalist’, who raised hell about loss of privacy of Henrietta Lacks and anyone genetically linked to her. This is how the logic goes - even though sequencing HeLa cells will make lives of humans secure, it will give away the genomic information and violate ‘genetic’ privacy.
Given how important privacy is in this country compared to safety of people, a new commandment needed to be written to protect the privacy of everyone linked to Henrietta Lacks since pre-historic times !
Someone asked on Twitter: “Does that commandment protect me from my brother, if I want to release my genomic data to public?”
Our answer: “The rule-makers are not done. This issue will be clarified in a future commandment.”
Seriously, have we established a new rule, or is NIH merely trying to make Lacks family happy to for PR or PC?
Other viewpoints exist. For example, Anders Kiss wrote in an earlier commentary -
I could not disagree more. The Lacks family has lived in poverty while JHSM and biotech companies have made millions of dollars off of HeLa cells, without paying any royalties at all.
Venter published a composite initially, and then his own diploid genome. Given Venters need for the spotlight, publication of his diploid genome probably had as much to do with media attention as with actual science.
Venter is extremely wealth, the Lacks are not therein lies the difference. I do not think any commercialisation of human genome information should occur without consent and permission AND royalties. Public usage for academic is a different matter. But that is NOT what happens with HeLa cells. They have been a very long and sustained source of revenue.
Vince Buffalo disagreed on other point -