Happy (belated) New Year to everyone!
With a new decade starting, many people might have spent time reflecting on the past year, perhaps decade, and set new goals for the coming year(s). This year I have one main goal – to complete my master thesis! I returned to Germany at the end of January and I’m currently doing my last lab rotation at the German Cancer Research Center here in Heidelberg, which will be the last requirement I need to complete before I can start my master thesis. As my time at yale came to an end, I reflected a lot about my time there and will share some of my thoughts in the next post. I’ve unfortunately been absent for a while as work in the lab has picked up and I really wanted to focus on my lab work in the US.
In this post however, I will finally talk about the long overdue second part in the “science and Ethics” series – HeLa cells: the first human cancer cell line to be isolated from a patient, Henrietta Lacks, and cultured in laboratory conditions in John Hopkin’s Hospital in 1951. The unsettling aspect of the story was they were isolated from the patient, a working class African American woman without her consent, opening the discussion for a far more elaborate problem of equality, consent and patient privacy in the nascent stages of biomedical research.
I got the idea about this post from one of my lab mates, who is a teaching assistant for a science ethics course, here at Yale. To start, some background on HeLa cells: They are a widely used cell line in Biomedical research and were isolated from Henrietta Lacks’s aggressive form of cervical cancer. In the following decades, HeLa cells were used for important cancer studies, drug development, the polio vaccine development and viral research. They were sent to space and targeted by nuclear bombs, as for the first time scientists had a way to test the effects of substances on human tissue. HeLa cells were therefore a keystone in developing applied therapeutics and laying a foundation for future research across many scientific fields.
While researching for this post back in 2019, I got really intrigued and ended up reading Rebecca Skloot’s “The immortal Life of Henrietta Lacks” to learn the full story. I finished reading it this morning and wanted to write the post with the book fresh in my mind. In the book, Rebecca follows the Lacks’, particularly Deborah (Henrietta Lacks’s daughter) in her journey to uncover the truth about her mother’s cells. Beyond the HeLa cell story, the book is a raw and captivating read that makes you feel like you’re right there with them in the story, and I can only recommend it to everyone.
The book illustrates to what extent the Lacks’, among other research “victims” were kept in the dark over decades about the procedures and biopsies performed, including the isolation of HeLa cells. Of course today, research on patient material is strictly regulated with defined laws, but the start of research on human tissue gave rise to a privacy problem that did not exist up until then – the one of personal genetic material or the “genetic fingerprint”. The issue here is that genetic material gives accesses to the core of our identity and property, our bodies – resulting in the ability to obtain information from predispositions to disease, through relationships to relatives, to personal identification and profiling.
Although patient studies and research is very regulated, still today the question about patient data sharing is relevant and will likely be a reoccurring topic in future biomedical advances. As with the golden state killer, the advantages to scientific progress are unquestionably valuable, however these advances might come with unchartered territory and controversy in regard to genetic privacy.