Week 13 Discussion Board #3

"'My nerve broke down,' she said.  'I just couldn't take it. My speech is coming back a little better--I almost had two strokes in two weeks cause of all that stuff with my mother cells.'
Then suddenly she was talking abouther family history, saying somthing about the 'Hospital for Crazy Negroes,' and her mother's grandfather having been a slave owner. 'We all mixed.  And one of my mother sisters converted to Puerto Rican.'
Again and again she said 'I can't take this anymore,' amd 'Who are we supposed to trust now?'  More than anything, she told me, she wanted to learns about her mother and what her cells had done for science.  She said people had been promising her information for decades and never delivering it.  'I'm sick of it,' she said.  'You know what I really want?  I want to know, what did my mother smell like?  For all my life I just don't know anything, not even the little common little things, like shat coor she like?  Did she like to dance?  Did she breastfeed me?  Lord, I'd like to know that.  But nobody ever say nothing.'
SHe laughed and said, 'I tell you one thing--the story's not over yet.  You got your work cut out for you, girl. This thing's crazy enough for three books!'"--p.53, The Immortal Life of Henrietta Lacks. 
So, this passage stood out to me, because there is little mention in science of anthropological detyails about people who have been the subjects of study--more often, we wax biographical about the scientist who does the research than we are about the person whose tissue or behavior or other characteristic is studied.  I think this story is unique, because it makes no pretenses about who Skloot is dealing with--it's not condescending, like "The Help," written in "black" vernacular dialect by a white woman--but Skloot does preserve the realness of the words she hears from people talking about Henrietta Lacks.  Family members are given direct quotes, without any editing, to preserve intent and authenticity, not to mock them or challenge their dignity.  I think there's a little to be said, also, for the fact that Skloot was consumed by passion for this subject--it's apparent in the amount of work she does, that she was consummately invested not only in getting this story out to the public, but to getting the point across to the world--the people who are related to the most important woman in medical history can't afford themselves to see a physician, and they are not recognized as related to someone who turned tissue culture and research on its head, or given royalties from the sale of their own kinswoman's cells, unchanged for fifty years.  It is also a stain on American belief that we live in a post-racist society.  This family has been directly the subject of discrimination and dehumanization because of their skin color and their socioeconomic background, and that's embarrassing, but what will any of we comfortable white people do with that information?  It looks like more of the same thing we've been doing-a sigh, a brief mention of how unfair it is, and then back to business as usual.
This passage raised a couple of questions for me:
1.) What compensation (intellectual property, money, celebrity, recognition, etc) did/will the Lacks family recieve for Henrietta's momentous contribution to medicine?
2.) How did the family warm up to Skloot to finally allow her to ask them questions about Henrietta?
These are the primary questions at the fore of my brain now. More will probably come, as I read more.  I think, as a part of a medical family, that the issue of ethics is the most important one set up for discussion and reflection in this book so far--the sense of unfairness that the Lacks family feels about this situation is beyond justified, and I want to know how the medical community, and especially Johns Hopkins Hospital, is going to address it, and when.