> Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data.
Apart from privacy and "ownership of one's genetic material", why?
Saying "Joe Smith's DNA contains a vital clue to solving parkinson's" doesn't affect Joe's ability to monetize.
Saying the same about "unspecifed_37" doesn't affect anyone's privacy.
There was a good episode of Radiolab about her, as well as a good interview on Dr Kiki's Science Hour with the author of the book written about her life and legacy.
Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
I don't want to be callous, but look at the cost-benefit calculation:
Cost: One disgruntled family.
Benefit: Polio vaccine. Treatments for cancer, HIV, various toxins, and other stuff I don't know about in the 50,000 research papers on HeLa. I am not exaggerating. There really are over 50,000 papers about HeLa.
That doesn't really change the fact that there were issues with her informed consent. When HeLa cells were first derived, most of the benefits weren't even on the radar. I don't think the initial investigators could have imagined what would have happened, let alone the patient.
I think this is a case where the system didn't work... but more because the science got ahead of the ethics. Sure, excellent science has been done with HeLa cells, but it all started with an ethically ambiguous beginning. For example: why do we know her name? This alone should never have happened.
When HeLa cells were first derived, most of the benefits weren't even on the radar.
Excuse me? It was the first human cell line that could grow in culture indefinitely. Doctors and researchers immediately recognized the potential of HeLa cells. It took less than three years before the cells were used to mass-produce Jonas Salk's polio vaccine.
I am not exaggerating when I say that millions of people today owe their lives to HeLa. Had doctors been forced to do what you call ethical, those people would be dead. With so many lives at stake, the objections of the family (or the individual) simply don't matter.
For example: why do we know her name? This alone should never have happened.
Originally she was anonymized. Later, researchers wanted to get genetic information from her living relatives. Somehow the press found out. Perhaps a relative told them.
Comments
> Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data.
Apart from privacy and "ownership of one's genetic material", why?
Saying "Joe Smith's DNA contains a vital clue to solving parkinson's" doesn't affect Joe's ability to monetize.
Saying the same about "unspecifed_37" doesn't affect anyone's privacy.
Look up the story of Henriette Lacks and her family's reactions to finding out scientists were using her cells in all kinds of experiments.
http://en.wikipedia.org/wiki/Henrietta_Lacks
There was a good episode of Radiolab about her, as well as a good interview on Dr Kiki's Science Hour with the author of the book written about her life and legacy.
Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
I don't want to be callous, but look at the cost-benefit calculation:
Cost: One disgruntled family.
Benefit: Polio vaccine. Treatments for cancer, HIV, various toxins, and other stuff I don't know about in the 50,000 research papers on HeLa. I am not exaggerating. There really are over 50,000 papers about HeLa.
I think the system worked very well in this case.
That doesn't really change the fact that there were issues with her informed consent. When HeLa cells were first derived, most of the benefits weren't even on the radar. I don't think the initial investigators could have imagined what would have happened, let alone the patient.
I think this is a case where the system didn't work... but more because the science got ahead of the ethics. Sure, excellent science has been done with HeLa cells, but it all started with an ethically ambiguous beginning. For example: why do we know her name? This alone should never have happened.
When HeLa cells were first derived, most of the benefits weren't even on the radar.
Excuse me? It was the first human cell line that could grow in culture indefinitely. Doctors and researchers immediately recognized the potential of HeLa cells. It took less than three years before the cells were used to mass-produce Jonas Salk's polio vaccine.
I am not exaggerating when I say that millions of people today owe their lives to HeLa. Had doctors been forced to do what you call ethical, those people would be dead. With so many lives at stake, the objections of the family (or the individual) simply don't matter.
For example: why do we know her name? This alone should never have happened.
Originally she was anonymized. Later, researchers wanted to get genetic information from her living relatives. Somehow the press found out. Perhaps a relative told them.
> Look up the story of Henriette Lacks and her family's reactions to finding out scientists were using her cells in all kinds of experiments.
As I said, apart from privacy and monetization, so what?
Note - I think that her family should be paid. I also think that she had some privacy rights that were violated.
There's also a really good Law and Order episode titled, "Immortal" from this past sesaon, based on this.