Henrietta Lacks was a poor 31 year old black woman who died at the age of 31 in October 1950 from metastasised cervical cancer which ravaged every single organ inside her body. During the course of her treatment at Johns Hopkins, a surgeon sliced away cancerous and healthy portions of her cervix which landed in the lab of Dr. George Gey who by 1950 had devoted around 30 years to the pursuit of an ‘immortal’ cell line: human cells that would reproduce endlessly in test tubes to provide a steady supply of cells for medical research. Researchers usually spent more time in trying to maintain live cells than in actual research. Things changed dramatically when Henrietta’s cancer cell tissue was placed in a culture medium by Gey’s lab assistant. The cells continued doubled in 24 hours and have continued to proliferate endlessly since then. These cells have bee used extensively for medical research since the time they were first isolated. The fact that 76000 research articles have been written citing the use of these cells bears testimony to their ubiquity in medical research. The polio vaccine was discovered all thanks to research and experiments performed on these cells. These cells are till used as teaching and research tools in universities across the world.
But there is a small catch which makes this case intriguing. The cells were taken and experimented upon without the explicit approval of Henrietta Lacks or her family – something which raises questions about ethics, privacy and intellectual property. Today these cells sit by the trillions in laboratories and industrial biology labs across the world ready to be experimented upon. All this while Henrietta’s family did not even know about the immortality of her cells. It was only after researchers investigating the HeLa cell line tried to use her husband and children in research without informed consent that this thing came to light. They didn’t realise until a couple of years ago that her complete genome had been sequenced and put out for the public to see. The larger ethical question over here concerns the privacy of the individual and the scientific freedom of researchers. Was Dr.Gey being unethical in not asking for Henrietta’s approval ? What if she had refused ? There are growing concerns regarding the power of consent for potential subjects and its implications for medical research. Anonymity and privacy go hand in hand and it is usually not possible, thanks to the internet, to guarantee either. What should be done ? These are questions which have no right or wrong answers.
Another dimension to this debate is regarding whether or not Henrietta’s family should receive financial benefits accruing from the discoveries and the use of her cells. Multi million dollar biologics have been developed using these cells. Do the Lacks’ survivors have the right to get financial compensation from what was a genetic quirk just because they belong to the same family? The ATCC sells these stocks of HeLa cells for $359 to non-profit institutions and $431 to for-profit entities, these fees justifiably support the personnel, maintenance, and storage of HeLa and thousands of other cell lines, microorganisms, and genetic material. Though the legal basis to provide financial compensation to the Lacks’ family is described as flimsy at best, strong moral ethical grounds do exist at least for those who were subject to research without their explicit approval.
The ground rules for medical ethics and human subject consent are completely different from what existed in 1951. Most certainly, HeLa cells were an enabling technology for a multitude of medical developments that continue to alleviate suffering and improve the human condition worldwide. The Lacks’ case provides multiple levels of complexity, which must be pondered upon. It raises more questions than it answers. As scientists tinker more and more with the human genome, similar situations seem all the more likely. The present understanding of medical ethics and the laws regarding protection of medical innovation need to be able to accommodate this grey area. Are we ready?
Mohit is a member of LSD. This article was written as an afterthought to issues raised during a brainstorming session to flesh out ideas for a course project at IIMA.