Reading for Writing – The Immortal Life of Henrietta Lacks Part 2

Progress? I’ve finished this wonderful book.

Observations and Thoughts About Writing:

• I love the realistic way the author portrays the Lacks family. Some of the scenes feel as if she just transcribed them from her audio recorder, which led to their credibility. There is one scene in particular toward the end where she is describing an interaction between two of the Lacks siblings, one of which is very religious. The author describes word for what what was being said and sung without a lot of herself getting in the way. I really like nonfiction authors who let the reader decide the importance and feeling surrounding a scene, instead of coloring it with their opinions and views.

• I hadn’t noticed at the beginning, but this book has a timeline for a header at each chapter. As the author bounces back and forth between information about the Lacks family, Henrietta’s story, and the state of HeLa cells (Henrietta’s tumor cells) and the medical field, I found the timeline a very helpful tool to orient my brain. It was especially helpful in keeping track of the research being done on Henrietta’s cells and the legal progress being made in field of medical privacy.

Other Thoughts and Questions:

• I read the afterward. I recommend reading the afterward if you’re at all interested in medicine. There are two essential medical issues at the center of this story: informed consent, and retaining rights to tissues or cells once they leave a person’s body. The law pertaining to these subjects is called the Federal Policy for the Protection of Human Subjects, or the “Common Rule”.

• Currently, and to my understanding (I am not a lawyer or medical professional working with tissues), doctors only need to have informed consent when the tissues or cells are connected to any identifying characteristics or personal data (like a name). BUT, with our ability to look at DNA and sequence genetic information, a sample of DNA can be connected to a specific person. We don’t need a name or a birthday or a description of what a person looks like to connect a sample to an actual person. All we need is their DNA. So, I guess the question then becomes: If you have a person’s DNA, is that an “identifying” characteristic? Apparently, there’s a medical advisory committee whose job is to re-assess this question every couple of years. The other issue doctors cite with obtaining informed consent is that desirable tissues usually come from people with aggressive diseases who, for lack of a better way to put it, die quickly, which makes getting informed consent more difficult in the moment.

• In terms of retaining rights to tissues or cell lines, well, that’s clearly a no-go as far as I can tell (as decided in a California Supreme Court case in 1990). If informed consent is asked for, there should be some fine print authorizing medical researchers to potentially commercialize your tissues in the future, but again, only if your name is connected to the sample. Lots of doctors and researchers worry that if people retain the rights to their tissues or cell lines that they could pull access to those tissues after agencies have put millions of dollars into research and development. They worry that it would slow down discovery and progress in the medical field.

• It’s really hard to say what might happen in this field legally in the coming years as technology gets better and more affordable. Some questions that this book has left me asking: What is privacy? Can I ever really ensure my privacy if my DNA is floating out there in the world? Have I ever contributed to a tissue storage bank and not know it because I didn’t read the fine print before surgery?

• I also have one very strong parting thought: Who the hell is helping the poor, the disenfranchised, the underprivileged, minorities, the disabled, the uneducated, immigrants, and anyone else really, navigate the medical world? We need to do better!

Additional Resources if you’re interested:

The Legacy of Henrietta Lacks – Johns Hopkins – This has Henrietta’s story and what Johns Hopkins is doing to uphold her legacy.

Scientists Raise Concerns about Revisions to Human Research Regulations – Article in The Scientist about the Common Rule from 2019.

Has anyone else read this book? What did you think of it? Let me know in the comments?

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