I just finished reading the wonderful new book, The Immortal Life of Henrietta Lacks, by Rebecca Skloot. It is about the supersized contributions of a little known woman to science, it is about a family, it’s about a journalist.
Skloot’s years and years spent researching this book, from her tireless attempts to sway the Lacks family to talk with her, to her endless patience in gaining their trust, has given her a uniquely personal perspective on this story. While she first heard of Henrietta Lacks, the woman who is HeLa cells, in a college course, she has over the years integrated herself into the story of the Lacks family. When it came to finally writing this story she decided to do so from a first person perspective, interweaving information about the Lacks family, Henrietta, and the science made possible by HeLa cells, with her own narrative of researching this book.
Skloot also brings up numerous tricky issues tied to the story of Lacks family. Some are social – class, race, education. Some are ethical – particularly the issue of consent. Her afterward gives a fantastic overview of the state of tissue-donor consent for research in the U.S. today. In many cases consent is not needed to use tissues taken from patients in research. That mole you had biopsied? It might be in storage somewhere, waiting to be used for future research. Once tissue is taken from your body, you no longer have control of it. While this is gradually changing – you may be notified in the fine print that your tissues may be used for future research – it remains a problem. Especially for the one-in-a-million sample that turns out to be special in some way and becomes extremely valuable for biomedical research, just like Henrietta’s tumor cells.
On the other hand, when consent is given for using tissues in research, there can be problems if the donor puts too many restrictions on the use of their tissues. Take for example, a cell line, where a donor stipulates that the cell line made from their cells must be destroyed after a certain period of time. Perhaps the donor’s cells will be turned into stem cells for research on adult stem cells (these are called induced pluripotent stem cells by scientists), and the donor is worried about what might happen to the cells in the future since stem cells can be turned into almost any type of other cell, just like the stem cells in an embryo can form all the parts of the body. When the scientists who originally do the research publish what they did to share with the entire scientific community, how will other scientists be able to verify that what they say is true if the specific cells they used to do the research don’t exist anymore?
Something similar to this actually did happen and is outlined in an editorial that was published in the research journal, Nature, last August. It’s an expectation in science (and stipulated by many journals that publish scientific research) that once research is published, all the things used to do that research needs to be available to other scientists, either sent to them from the original lab, or available to buy from a company. And this includes living things like cell lines. This ensures that further valuable research can be done, and also allows independent researchers to verify results. If a cell line is not longer available because of restrictions placed on the cells by the donor, then this severely limits the impact and usefulness of the research. It can’t be tested again, why should anyone believe it?
This is only an itty itty bit of the huge conundrum surrounding using human tissues in research. Especially now that tissue is no longer anonymous. With DNA sequencing technology it’s theoretically now possible to find the identity of the donor. And what if the donor’s tissue has a mutation in a gene that might give them a high chance to have a disease like heart disease or cancer? Do you tell them? What about their children who might also have this mutation? What if their insurance company finds out? Thankfully in 2008 the Genetic Nondiscrimination Act was passed to prevent this kind of situation with an insurance company or employer.
Althought I haven’t covered this in depth I hope I’ve given you some interesting things to think about! And go read The Immortal Life of Henrietta Lacks! Even if you aren’t a super nerdy scientist like me – it’s written for everybody.