Page 2 of 2 <12
Topic Options
#91558 - 05/25/12 09:07 AM Re: May 2012 Selection: The Immortal Life of H. Lacks [Re: TraceyB]
StephA Moderator
Ching Shih


Registered: 06/13/02
Posts: 2744
Loc: Toronto, Ontario, Canada

Offline
Sorry for my belated post, I was away on vacation!

I loved this book - when I finished reading it for the first time I immediately started it again. I think the way Skloot told the past-story and the (then)-present-story worked really well. The book designer who figured out the time-line across the tops of each new chapter is a genius.

I also thought Skloot did as good a job of telling the scientific/technical story with the personal/socio-cultural story.

And now I want to go read it again!!

Top
#91922 - 03/24/13 11:33 AM Re: May 2012 Selection: The Immortal Life of H. Lacks [Re: StephA]
LaSalleUGirl Moderator
Ching Shih


Registered: 06/25/01
Posts: 1895
Loc: Philadelphia, PA, USA

Offline
Saw this today: http://www.nytimes.com/2013/03/24/opinio...&pagewanted=all

I can understand (though with wincing and cringing) the absence of appropriate consent procedures when Henrietta Lacks's cells were first harvested, but I find it so disturbing that current scientists -- who SHOULD be held to higher standards due the Declaration of Helsinki (which was first signed in 1964, too late for Henrietta in the first place). One of the core principles of the Declaration of Helsinki (and of the Belmont Report, which is the related document developed for the United States) is the importance of consent and the protection of participants' confidentiality. The research firm that sequenced the genome had to have gone through some sort of review proceeding in order to do that sequencing, and NO ONE raised the confidentiality question? That's insane.

Grrr.

Top
#91923 - 03/26/13 09:10 AM Re: May 2012 Selection: The Immortal Life of H. Lacks [Re: LaSalleUGirl]
StephA Moderator
Ching Shih


Registered: 06/13/02
Posts: 2744
Loc: Toronto, Ontario, Canada

Offline
LaSalleUGirl - thanks for this. It's hard for me to understand how this got through all the steps (and red tape, I'm sure) with the confidentiality issue never being raised? Ridiculous.
Top
#91925 - 03/26/13 07:48 PM Re: May 2012 Selection: The Immortal Life of H. Lacks [Re: StephA]
CaitlinM2



Registered: 03/03/09
Posts: 457
Loc: San Francisco Bay Area

Offline
What blows me away is that the organization that sequenced the HeLa genome initially maintained that confidentiality wasn't an issue because it also maintained (erroneously) that nothing specific could be inferred from the genome about Henrietta Lacks's or her descendants' DNA. How could a molecular biology group have been so unaware of the resources currently available to easily mine the raw data it produced? All aspects of this situation boggle the mind.
Top
Page 2 of 2 <12


Moderator:  Kivrin, Bear, LaSalleUGirl, PrimulaMary, StephA 
Hop to: