Cell Research and Ethics

Earlier this week I finished reading Rebecca Skloot's The Immortal Life of Henrietta Lacks, a book that details research that was conducted with HeLa cells, which were taken from Henrietta Lacks without her knowledge and consent, and proved instrumental for the last half century of scientific and medical research.

The book originally came into my awareness as I have always had an interest in Ethics, my favorite branch of philosophy, and the ethics of advancing certain medical technologies and certain scientific research has long been an interest (I actually wrote my Ethics seminar paper in college on the ethics of human cloning).  So, upon hearing about this book, I knew I had to read it.  Coincidentally, our local library book club selected it for its fall program, so I was able to not only read it, but discuss it with others, which I always enjoy (as someone at the group said, its like getting to re-read the book multiple times from someone else's perspective).

As I hope my Goodreads review linked above will at least indicate, this is a book that can yield hours upon hours of great discussion on a variety of topics.  But the ethics continues to be what interests me the most, and continues to be what I intellectually chew on in response to the book.

When my cells leave my body, do I have ownership of them, is the great legal question that arises out of this book (in part, because there's not really any relevant law, cases, statutory, or otherwise to cell-based, or even genetic research, yet).  And as interesting as that is (and it truly is from a legal standpoint - had a good 30 minute conversation with a colleague solely on that question), there are still more interesting ones.  When cells and/or tissues are removed from an individual's body, it is acceptable for a doctor/scientist to preserve such to use for research? Do they need to inform the individual that such cells/tissues may be used for research? Does the individual still have a say so once they leave, i.e. can they prevent the research from taking place?  What would informed consent look like - I mean, even very educated and intelligent people will have very little idea about what the research would constitute.  If someone conducts research on human cells and tissues, is it research on humans? Do my cells and tissues constitute part of my humanness, my identity?

Like so many things in my life, I really have very little idea on what the answers to these questions are, or if concrete answers even exist for such dilemmas.  But I do firmly believe that having discussions about such questions are important for our society and world.  There's a great line from Jurassic Park (at least I consider it a great line) where a character states, in response to the groundbreaking work of scientists to create the dinosaurs through captured DNA, "but your scientists were so preoccupied with whether they could that they didn't stop to think if they should."  Sometimes, we get so wrapped up in the modern world and what we may be capable of that we should take the time to have the discussions about whether these "things" we may be capable of are worth achieving.  Humanity is capable of both great good and great evil.

Being conscientious of that reality as we pursue our future, and having dialogue to caution our pursuit as necessary, certainly seems like a reasonable and good idea to me.