Customer Review

5.0 out of 5 stars Essential reading for all scientists working with clinical samples, 17 Dec 2013
This review is from: The Immortal Life of Henrietta Lacks (Paperback)
The debate about the need for fully informed consent when taking research samples can hardly be described as 'raging'. Rather it is a cold war being fought between those who believe the rights of patients are so blindingly obvious that they really don't need to be defended and those who agree whole heartedly with them, but....

The `buts' tend to be along the line of 'you can better achieve the patient's true wishes by ensuring use of the sample than by failing to take or keep samples because of difficulties in properly informing patients and obtaining consent'. Evidence for this is usually anecdotal; you will often hear "I've talked to many patients and they all say that they just want their samples used". An unspoken assumption is that there is no harm done if the patient never knows.

Rebecca Skloot has provided the ultimate rebuttal to those in favour of more lax regulation of the taking and use of clinical samples for research.

Painfully for everyone involved in clinical research, the arguments used by the clinicians and scientists from the 1950s and 60s have a very contemporary feel. For example "The research carried out with these cells is for the benefit of mankind and not for personal gain" or "A patient will not have the academic qualifications to understand the purposes for which their tissue will be used, much less the technicalities of specific experiments". It is a very short step between this and the justification "There are very few cancer biologists in the world, it would be irresponsible to put myself at risk - however slight"; a justification used by a doctor for injecting HeLa cells into others while not volunteering to inject them into his own arm.

Rebecca Skloot also shows just how much harm can be done to the donors of these samples and their families. Lack of understanding on the part of the patient, far from being a justification for inadequate consenting, is actually a source of potential anxiety and needs to be addressed. Unfortunately, this cannot be left to the individual scientist as the link between actions and consequences are complex and rarely clearly understood by researchers. As stated in this excellent book, although the family of Henrietta Lacks still `wrestle with feelings of betrayal and fear' they also feel pride and should have been given the right to understand the great contribution their mother has made to mankind rather than having to discover it by perseverance and struggle.

There is therefore a clear requirement for a firm regulatory framework, a concept that is not universally popular.
Help other customers find the most helpful reviews 
Was this review helpful to you? Yes No

Be the first person to comment on this review.

[Add comment]
Post a comment
To insert a product link use the format: [[ASIN:ASIN product-title]] (What's this?)
Amazon will display this name with all your submissions, including reviews and discussion posts. (Learn more)
Name:
Badge:
This badge will be assigned to you and will appear along with your name.
There was an error. Please try again.
Please see the full guidelines ">here.

Official Comment

As a representative of this product you can post one Official Comment on this review. It will appear immediately below the review wherever it is displayed.   Learn more
The following name and badge will be shown with this comment:
 (edit name)
After clicking on the Post button you will be asked to create your public name, which will be shown with all your contributions.

Is this your product?

If you are the author, artist, manufacturer or an official representative of this product, you can post an Official Comment on this review. It will appear immediately below the review wherever it is displayed.  Learn more
Otherwise, you can still post a regular comment on this review.

Is this your product?

If you are the author, artist, manufacturer or an official representative of this product, you can post an Official Comment on this review. It will appear immediately below the review wherever it is displayed.   Learn more
 
System timed out

We were unable to verify whether you represent the product. Please try again later, or retry now. Otherwise you can post a regular comment.

Since you previously posted an Official Comment, this comment will appear in the comment section below. You also have the option to edit your Official Comment.   Learn more
The maximum number of Official Comments have been posted. This comment will appear in the comment section below.   Learn more
Prompts for sign-in
 


Review Details

Item

4.5 out of 5 stars (265 customer reviews)
5 star:
 (170)
4 star:
 (68)
3 star:
 (18)
2 star:
 (7)
1 star:
 (2)
 
 
 
8.99 6.29
Add to basket Add to wishlist
Reviewer


Top Reviewer Ranking: 13,737