Essential reading for all scientists working with clinical samples,
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.