Who owns us? Seriously, I ask you this question as some food for thought.
Friends of mine, Steve and Louise, had been after me for quite a while to read The Immortal Life of Henrietta Lacks, a book that was published in 2010 and which they probably read not long after its issue. It’s taken me until early-2017 to finally read this book but it’s not just interesting but also relevant to some of our work.
You can read more about this book and Henrietta Lacks, herself, in the link I gave, above; however, she was a poor woman who had cancer and went for treatment. Her cancer cells were harvested and propagated. Today, many people use what are called “HeLa” cells for their research but don’t happen to know the history behind them. “HeLa” stands for “Henrietta Lacks.”
All those years ago, the general thought was this – if you were poor and a hospital gave you free treatment, then they deserved to use your cells for research. In fact, even if you weren’t poor, these cells weren’t something you would want back, anyway.
Over the years, the ethics of using people’s cells came into question. So, ask yourself this question – if you went for a treatment and your cells were taken, who owns them? If someone profits from them, would that be you as the person who gave the cells, the researcher who uses them to advance science, or possibly someone else?
As a separate issue, if you were to go in for a routine blood sample, who owns the remains of this? It was not necessarily meant for research but for one routine test or another to determine your general health so what would your expectations be regarding materials such as this?
Consent and Other Details
The timing of my reading this book, and just by chance, was that I read it in the middle of my employment at a biorepository where we were required to track both whether a subject had consented to something AND what type of consent they made. By accident, I read this book at the most relevant time in my career, helping me understand the consent forms as something more than the check boxes that I saw in the LIMS.
In addition, at a group meeting, the big boss happened to one day bring up the very topic of HeLa and the issues of consent because Oprah Winfrey had adapted the book to film. Check the link above if you’re interested in viewing this movie, by the way.
Whether we can agree on the ownership of the “cast off” or “obtained” materials from our bodies, the subject is one that we should all be aware of in order that we can make a fully informed consent AND so that we, as LIMS/LIS professionals, can understand as important issues for our customers. One thing I learned extensively about in training for my job with the university is what it means to have “full consent” and there are more issues than most of us realize. Still, if you are interested in this, you should definitely begin by studying the issues surrounding the HeLa cells.