Monday, September 14, 2015

Holding Back the Truth

There is a local angle to this story, but the focus of it should be worldwide.

Henrietta Pleasant Lacks was an African American woman from Virginia who moved to Turner Station, an African American section in southeast Baltimore County, in 1941. She came up here with her husband, who relocated after finding work at the Bethlehem Steel plant in Sparrows Point. Ten years later, she died at Johns Hopkins Hospital after fighting cervical cancer for many months.

While she was undergoing radiation treatments, doctors removed cell samples from her cervix - from the healthy part and from the cancerous section. I don't even pretend to know how this worked, but these cells became the "HeLa (named for her) immortal cell line," and were used in biomedical research - research that medicine used to develop the polio vaccine, in vitro fertilization, HIV/AIDs research, and other major scientific breakthroughs. Here is an article to help clarify what the cells were used for; suffice it to say they have been amazingly helpful in many ways for many years.

However, and this is a BIG however, the cells were taken from Mrs Lacks without her knowledge and consent, and it was not until just a few years ago that her family became aware of all that, and they are now being given some say in the matter of who gets to use the cells' DNA code, and for what. They also now receive acknowledgement in research papers.

Ms Sims
The latest wrinkle is that Jackie Sims, a mother in Knoxville, TN, whose 15-year old son was assigned to read the book The Immortal Life of Henrietta Lacks feels that the book is pornographic.

That's right. She went there. Ms Sims says that the sections in the book that describe the gynecological problems that led Mrs Lacks to seek medical attention are pornography.

"I consider the book pornographic," she told WBIR-Knoxville. "There's so many ways to say things without being graphic in nature, and that's the problem I have with the book."

The book is scientific in nature, written by a science writer named Rebecca Skloot, and is not on the level of the average Danielle Steel potboiler.  But Sims feels that the story should be told in a "different way."

Ms Skloot took to Facebook to say, "Just in time for ‪#‎BannedBooksWeek‬, a parent in Tennessee has confused gynecology with pornography and is trying to get my book banned from the Knoxville high school system...I hope the students of Knoxville will be able to continue to learn about Henrietta and the important lessons her story can teach them. Because my book is many things: It's a story of race and medicine, bioethics, science illiteracy, the importance of education and equality and science and so much more. But it is not anything resembling pornography."

Just so we're clear, here, pornography is generally defined as the portrayal of sexual subject matter for the purpose of sexual arousal.  The simple mention of one's nether regions is not pornography.

Ms Sims is entitled to feel the way she does, although she is probably considered foolish by those who understand a) education and b) the normal reading and viewing material of 15-year-old boys.

But it seems wryly sad to me that the Lacks family was treated so shabbily by the doctors and researchers in the days before biomedical ethics and racial discrimination became more than passing thoughts to most in the majority, and now, here is a woman trying to hold back the truth all over again.

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