Interesting Quandry here

Started by Callie Del Noire, March 02, 2010, 12:13:56 AM

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Callie Del Noire

http://en.wikipedia.org/wiki/Henrietta_Lacks

Henrietta Lacks was a black woman who died of cervical cancer and whose cancer cells were used by Johns Hobkins (and others  later on) to do all sorts of tests. They were used to test the Polio Vaccine, and later on were used in the testing of AIDs treaments and such.

A friend pointed me towards a book (The Immortal Life of Henrietta Lacks). The book shows the progress that came from her life, the fact that she and her family were uniformed of what was being done with her cells, and the impact that realizing what had been down without her (or her survivors) persmission.

Big question here..Is it ethical for researchers to simply TAKE something of a person and profit from it without asking permission, or even repaying them back?

Zeitgeist

Its not even a question in my mind. Not ever. Never is there just cause to take someone's personal essence without permission. All or most of the profits of any thing culled from this woman's cells should be court ordered to be paid to any surviving relatives.

I'm sitting here trying to think of any situation where it would be acceptable, and its just not coming to me.

Brandon

I suppose it depends on what your personal ethics say. Ethics are much like morales, meaning everyone has varying ideas of what is and is not ethical just like they have different ideas about what is right or wrong. My personal opinion is they should have asked for permission before doing any kind of experimentation. While I would welcome scientific experimentation with my body after my death if it meant saving another persons life other people dont feel the same. The question is what did she want? My answer: I have no idea.
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Trieste

Of course she should have been asked, but it was the 50s and she was black. Do you think they felt that they needed to ask permission back then? Of course not - and they really didn't need to. Medical ethics are shaped by cultural climate, just like many other things.

Unlike Tuskeegee, however, the taking of the cells was not debilitating nor was it damaging to her. I think the treatment described was probably incompetent due to racism (a lot of blacks were assumed to be promiscuous and thus carrying venereal diseases) but that had little to do with the sampling.

Should the family be paid? Eh... maybe. She didn't invent something, and she didn't innovate and she didn't actively take part in her research. It didn't harm her, and it's unlikely it changed the course of her disease. She gave cells. That's it. I really don't think any money is owed, any more than the subject of an examination is owed when a new kind of treatment is tested out on them. They agree to experimental treatment and very seldom are they paid for it other than the hope that it will work. Those doctors didn't take Ms. Lacks away from her family, and they really don't owe her family anything.

Oniya

You might be amused to know that Henrietta Lacks has gotten her revenge in a way.  The HeLa cell line has managed to contaminate a large number of other cell lines that were also used for research.

A Conspiracy of Cells: One Woman's Immortal Legacy and the Medical Scandal It Caused by Michael Gold goes into this particular (and apparently ongoing) issue.
"Language was invented for one reason, boys - to woo women.~*~*~Don't think it's all been done before
And in that endeavor, laziness will not do." ~*~*~*~*~*~*~*~*~*~*~Don't think we're never gonna win this war
Robin Williams-Dead Poets Society ~*~*~*~*~*~*~*~*~*~*~*~*~*~Don't think your world's gonna fall apart
I do have a cause, though.  It's obscenity.  I'm for it.  - Tom Lehrer~*~All you need is your beautiful heart
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Callie Del Noire

Today the big phrase is "Informed Consent". The folks at John Hobskin didn't inform her, or her family, that they were using her cells for study. Or later for sale and profit.

If a person doesn't 'own' their own body, who does? Where does our right of self determination end? Who should benefit financially from our own unique genetic layout? Does medical research have the right to come in and take what they want and give nothing back? If you believed the biomedical companies, they 'earn' the right and all that by the money they put into the research and the donors are a minimal contributor who merits little or no compensation. (Yet they can copyright everything they get from it)

What happens when someone turns out to have a genetic 'fluke' that grants the final step to helping cure cancer, AIDS or one of the other massive diseases that are rampant in the world, or allows us to fix problems like diabetes or Alzheimers?


Thanks Oniya for the reference, added it to my 'wish list' on Amazon. :D

Trieste

Firstly, it's pure folly to judge the collecting doctors 60 years ago by today's standards. Secondly, malpractice comes from two sources: malice and incompetence. One could argue incompetence by today's standards, failing to obtain consent, but we're talking about an era that came before modern medical ethics and before modern social reform.

Second, what did she cure? What did she create? What did she invent? Nothing. What did she contribute to? Testing. What harm was done by the taking of samples? None. Should you pay her descendants for the use of her cells? No, not really. At most I could see an argument for paying her what one would pay a test subject today for cells... oh, right, they don't pay them. Hm.

Oniya

Quote from: Zamdrist of Zeitgeist on March 02, 2010, 12:21:25 AM
Its not even a question in my mind. Not ever. Never is there just cause to take someone's personal essence without permission. All or most of the profits of any thing culled from this woman's cells should be court ordered to be paid to any surviving relatives.

I'm sitting here trying to think of any situation where it would be acceptable, and its just not coming to me.

This just came to me:  When investigators are trying to do a DNA match, they can ask for a sample (usually a cheek swab), or they can get the sample off of something that the suspect has used and discarded.  I even recall one case where the suspect was wise to the fact that the police were trying to get a sample (he refused cigarettes, a water bottle, and even licking an envelope they handed him with a 'refusal to submit sample' form), and the investigators managed to collect saliva that he'd spat onto a puddle in back of his workplace.

The rationale is that once you have discarded something, you have given up any claim to it. 
"Language was invented for one reason, boys - to woo women.~*~*~Don't think it's all been done before
And in that endeavor, laziness will not do." ~*~*~*~*~*~*~*~*~*~*~Don't think we're never gonna win this war
Robin Williams-Dead Poets Society ~*~*~*~*~*~*~*~*~*~*~*~*~*~Don't think your world's gonna fall apart
I do have a cause, though.  It's obscenity.  I'm for it.  - Tom Lehrer~*~All you need is your beautiful heart
O/O's Updated 5/11/21 - A/A's - Current Status! - Writing a novel - all draws for Fool of Fire up!
Requests updated March 17

Callie Del Noire

Quote from: Trieste on March 02, 2010, 11:35:14 AM

Second, what did she cure? What did she create? What did she invent? Nothing. What did she contribute to? Testing. What harm was done by the taking of samples? None. Should you pay her descendants for the use of her cells? No, not really. At most I could see an argument for paying her what one would pay a test subject today for cells... oh, right, they don't pay them. Hm.

Her cells were used to test vaccines, medicines and treatments. (Of note, testers used them for the first human Polio tests).

So, you're saying that it's okay for the company's to profit from your body just because you have a unique trait?

Trieste

I think it's safe to say that, from the number of women who have cervical cancer, her cancer cells were not a unique trait. They may have been a unique strain of cancer, but that's no more attributable to her than to whatever mutations caused the cancer in the first place.

Callie Del Noire

Quote from: Trieste on March 02, 2010, 11:59:36 AM
I think it's safe to say that, from the number of women who have cervical cancer, her cancer cells were not a unique trait. They may have been a unique strain of cancer, but that's no more attributable to her than to whatever mutations caused the cancer in the first place.

So if you were to be found to have a trait that predisposed you be immune to something (let's say.. HIV) tomorrow during a blood test, it would be perfectly okay for the folks who did a biopsy to develop it for a treatment without: A. Asking permission beyond the standard permission slip that lets them test a biopsy sample. B. Make a successful treatment and market it without any form of acknowledgment and/or compensation?

Trieste

Of course not; by today's laws and ethics they need to get my explicit permission first. But that is now, and you're trying to apply now standards to 1950.

And to clarify, I think that keeping the tissue donors out of the financial side also protects them, since it keeps them from being responsible for any economic losses incurred from a non-successful development. If you force companies to share the wealth, they will also seek to share the losses and I cannot say I honestly blame them.

Oniya

Quote from: Trieste on March 02, 2010, 11:59:36 AM
I think it's safe to say that, from the number of women who have cervical cancer, her cancer cells were not a unique trait. They may have been a unique strain of cancer, but that's no more attributable to her than to whatever mutations caused the cancer in the first place.

Interestingly, her strain of cancer is so unique (apparently tetrasomy 12 and trisomy 6, 8, and 17) and so capable of survival in its own niche, that there is some talk about giving it a species name.
"Language was invented for one reason, boys - to woo women.~*~*~Don't think it's all been done before
And in that endeavor, laziness will not do." ~*~*~*~*~*~*~*~*~*~*~Don't think we're never gonna win this war
Robin Williams-Dead Poets Society ~*~*~*~*~*~*~*~*~*~*~*~*~*~Don't think your world's gonna fall apart
I do have a cause, though.  It's obscenity.  I'm for it.  - Tom Lehrer~*~All you need is your beautiful heart
O/O's Updated 5/11/21 - A/A's - Current Status! - Writing a novel - all draws for Fool of Fire up!
Requests updated March 17

DarklingAlice

Quote from: Callie Del Noire on March 02, 2010, 12:07:02 PM
So if you were to be found to have a trait that predisposed you be immune to something (let's say.. HIV) tomorrow during a blood test, it would be perfectly okay for the folks who did a biopsy to develop it for a treatment without: A. Asking permission beyond the standard permission slip that lets them test a biopsy sample. B. Make a successful treatment and market it without any form of acknowledgment and/or compensation?

I think we all agree that the answer to A is clearly no, it is not okay. You need to be fully informed of what is done with your biological material, in up to a reasonable level of detail (e.g. Going to be used for cancer research). Someone can't just come in and take a sample say as part of a diagnostic process and then use it for unrelated research.

However the answer to B is, to my mind, just as clearly yes, I would have no problem with it. Why should I get acknowledgement or compensation when I have not done anything? Maybe I should get a fee for the sample given, but the value of the final product is dependent on the work put into developing it. I played no part in the development or research. I did no work therefore there is absolutely no reason that I should profit. This is analogous to saying that if I sell a piece of land, and after years of investment and development someone builds a business there, I should get a cut of that business' profits. Or to put it in human terms, if a person donates gametes to a sperm or egg bank, they get paid for the initial sample at the time it is taken. If the child grown from said gametes turns out years later to become a multi-millionaire business owner, the initial donor would not be allowed a cut of their child's profits (even though the child would not exist without the donor's unique genetic material). To claim otherwise is absurd.
For every complex problem there is a solution that is simple, elegant, and wrong.


Inkidu

If they're dead when the research is done. No they have no right to reparations because you can only reach so far beyond the grave legally. The family might have rights to the body if they want cells or something but if they're on ice. Nope.
If you're searching the lines for a point, well you've probably missed it; there was never anything there in the first place.

Merlyn

Quote from: Trieste on March 02, 2010, 12:20:44 PM
Of course not; by today's laws and ethics they need to get my explicit permission first. But that is now, and you're trying to apply now standards to 1950.

And to clarify, I think that keeping the tissue donors out of the financial side also protects them, since it keeps them from being responsible for any economic losses incurred from a non-successful development. If you force companies to share the wealth, they will also seek to share the losses and I cannot say I honestly blame them.

Not only could their be financial ramifications, but in today's society when law suits are almost a standard you must also consider that.  Say person A donated cells that lead to a vaccine for X virus.  Now say that three hundred people die from the X virus vaccine.  If that person is legally responsible for X virus vaccine, (and thereby has rights to profits from it) doesn't that also mean they are responsible for anything that occurs from the X virus vaccine?  Because you can't say that someone can have all of the benefits and rewards without any possible risk.  No company in their right minds would be willing to do that, all research would move out of the US if they had to pay out all of their proceeds and take all of the risk.
Check here if you care why I haven't been around.
Why must all of humanity be consumed by such insanity?

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Ons and Offs

kylie

          Some people do get paid considerable sums for participating in tests, and often get guarantees of medical treatment should the testing harm them.  Nothing near what the companies make off the medicines...  However, it isn't really correct to imply that companies demand test subjects "share the risks" as if their bodies were mere capital invested.

          Of course one can simply say, there used to be different standards for human subjects, or minorities, or what have you.  That might explain how some or many people thought then, but it also often overlooks resistance by some who didn't follow the piper like many others.  And in the sense of speaking about consequences, it really just falls flat.
     

Trieste

Was there a point to that other than to say, "You're wrong because I disagree with you?" :P

While some clinical trials do pay for subjects, it is mandated by law or by modern ethics. It is not unfair to assume that companies would ask subjects to share burden as much as they share wealth. Compensation offered is currently at the discretion of the company or the grant recipient, limited only by what they need to pass it by the board that approves human subjects research, and even then only if they are researching in conjunction with academia, I believe.

This is a frontier into which the law seldom steps, aside from litigation. This is not necessarily a good thing when it comes to things like commercial drugs. Wasn't a major one for diabetes just recalled due to impacts on the heart? The company was still denying it vehemently last I saw, but even if they are found to have falsified their data, they will likely only receive consequences in civil court, if at all.

Valerian

This actually reminds me of my literature classes in college.  We had many an interesting discussion over how much we could (or should) overlay our own morals, upbringing, world views, etc., on whatever work we were reading, works that might have been written centuries ago.  Is it right to call Mark Twain a racist because he used the N-word, then a common term?  Should we label writers such as Charlotte Bronte and Henrik Ibsen, creators of many strong female characters, as pro-feminist, when they lived decades before the term was even thought of?

In this case, the term "informed consent" wasn't used in a legal sense until this 1957 case.  The current federal guidelines for informed consent were apparently last revised in 2005.  The entire idea of informed consent is constantly changing.

To me, the idea of calling something illegal or immoral sixty years after the fact, going back to a time before the current laws and guidelines were in place, is pointless.  As far as criminal charges, I would assume that any potentially illegal actions couldn't be prosecuted in any case, since that's true of any action that's only made illegal after the fact.

Whether the family would be within their legal rights to sue in civil court, I don't know.  All I can say is, if that would mean yet another long, tangled, messy lawsuit that would profit a few high-powered legal firms far more than anyone else involved, I hope the family takes the high road and leaves the courts out of this.  Yes, there have always been individuals who rise above -- abolitionists where slavery is legal, etc. -- but to launch a lawsuit worth potentially billlions because a few people failed to rise above half a century ago doesn't seem useful to me.
"To live honorably, to harm no one, to give to each his due."
~ Ulpian, c. 530 CE

kylie

          "Was there a point?"  Yes.  Absolute relativism and extreme individualism produces a long line of possible injustices, and I wouldn't advocate taking that route.

Quote from: TriesteFirstly, it's pure folly to judge the collecting doctors 60 years ago by today's standards.
and
Quote from: ValerianTo me, the idea of calling something illegal or immoral sixty years after the fact, going back to a time before the current laws and guidelines were in place, is pointless.
Sure, the law may have changed.  That is, tossing in a pretty ambitious assumption that it's now consistently applied in a way that lives up to the spirit of the change.  (On many cases dealing with racial inequality, that simply isn't so.)  I would fuss more about the morality part, though.  If it is really pointless to be critical of the same society so many years earlier, then I'm inclined to say:  Really?  Then does anyone ever really learn.  I'm not convinced that our institutional practices and our public norms are the same thing.  Given that divergence, then it makes sense to point out some of the differences that persist between norms and practices over a long history. 

          If one simply says, oh society is different now, all that effectively gets whitewashed.  The logic of 'many people thought differently then' could easily be used to say we shouldn't study how any number of terrible things were organized and justified (almost always against some resistance) -- whether in short awful periods or in subtle, creeping ways that are still continuing.   

Quote from: TriesteSecondly, malpractice comes from two sources: malice and incompetence. One could argue incompetence by today's standards, failing to obtain consent, but we're talking about an era that came before modern medical ethics and before modern social reform.
So let's see.  Trail of Tears... Holocaust...  Atomic bombings...  World overlooking Rwanda...  A decade or so back, there was a serious lack of ethics around Srebrenica, in what was not long ago a presumptively modern European country.  Or, we can take something more individual like torture in Singapore or Burma or Iraq.  Perhaps by my "elitist, over-universalizing" standards these were all local, contained variations in ethics that cannot be judged usefully or discussed to any useful ends now by others with different values.  And if the arbitrer is going to be a question of "Was it legal then?"  Well...  Medical malpractice, systematic malnutrition, Ponzi schemes, all often technically quite legal.  Never mind that say at least half the country doesn't want to pay for them. 

          Where does this relativist trend end?  While you can say you've provided an elegant explanation, I don't see many lessons in that approach except maybe "live and let die [and just be happy it isn't your own people on the dying end today]."

QuoteSecond, what did she cure? What did she create? What did she invent? Nothing. What did she contribute to? Testing. What harm was done by the taking of samples? None. Should you pay her descendants for the use of her cells? No, not really. At most I could see an argument for paying her what one would pay a test subject today for cells... oh, right, they don't pay them. Hm.
This is based on a common to the West, but terribly individualist notion of justice.  Much the same argument could be used to say that because Black slaves contributed to a specific agricultural system we no longer have in the US, and because no individual Whites living today directly wronged them then as individuals, we should toss affirmative action.  That is overlooking the relative systematic damage that a community suffers over generations when others can freely take benefits from their bodies.  Notice many Blacks can still not afford to use those nifty medicines made from their own cells.
     

Trieste

I don't think I have any answers for you. I see the jump you made between the Trail of Tears/Holocaust and taking a cell sample of a cancer and I see where it is coming from, but you know... I believe in degrees. It's a separation of degrees. It's the sort of distinction we make between when to YELL VERY LOUDLY and when to speak normally even if it's not necessarily set out in the rules.

And I'm certainly not hijacking this with a debate on affirmative action.

So, I guess the best answer I can give you is that I don't believe Ms.  Lacks suffered the same violation of personal rights as the numerous Jews, gays, communists, etc who were Holocaust victims, and I believe that trying to judge past actions by current ethics is folly. You make mistakes, you learn from them, you revise your worldview, you move on.

So.

Callie Del Noire

As a descendant (distant) of  the folks who walked the Trail of Tears.. it's not quite the same thing.

The reason I brought up this subject is that the Lacks cell line is used as a justification at times for how biomedical business works. If they had their way, anything they find would be COMPLETELY theirs. While they make the cash at the cost of the consumer.

A lot of things seem to be more business oriented than the old 'do no harm' oaths the medical community typical pays mouth service to.

I'm not the best writer/speaker about such things. I just wonder where the 'ethics' in business went? When did curing a problem come up second to profiting from it.

Jude

In my opinion past racial injustices should never be retroactively considered unless they directly affected the living negative.  i.e. I'm perfectly fine with reparations being paid to the surviving Japanese-Americans who suffered from the World War II Internment Camp Policy, but not to their offspring.  It doesn't matter if you're poor because your ancestors were discriminated against or because your ancestors made stupid financial decisions; it's all luck of the draw, reason irrelevant, in both circumstances you're equally disadvantaged and our goal should be to help those who are disadvantaged regardless of the reasons that were out of their control if we're trying to facilitate true social mobility (which in my opinion is what makes America what it is).

All of that aside, even if she was alive today I see no reason why she should be compensated for work other people did on her cells if this harvesting in no way affected her negatively while she was alive.  Like Trieste said, she did nothing, the researchers were the ones who took the sample and gave it any sort of value at all.  As long as it didn't hurt her she's not entitled to anything in my opinion.

I also think there's a difference between legality and ethics.  Something which is unethical should not always be illegal (i.e. cheating on your spouse) and something which is illegal is not always unethical (acts of Civil Disobedience, stealing in some rare circumstances to provide for your children, et cetera).

I'm not so sure it was unethical to take her cells in this particular instance since no harm was done.  Clearly from a Utilitarian point of view the act was not only justified but morally correct; it brought about the most good in the world follow its execution.  However, I believe there could exist situations in which refusing to inform the patient could eventually lead to a problem; thus I think it should be illegal in all circumstances to take someone's biological material for research even if it does them no harm without informing.

There's also a very easy fix to the problem that avoids all of the moral ambiguities and confusion--work it into law that after the patient is informed that their cells will be used, they cannot say no, then there's no reason to lie.  I think it's perfectly reasonable for doctors and scientists to demand the right of ownership over any samples they take while analyzing the symptoms of or attempting to treat a patient; after all, how could it be considered morally defensible to refuse?

If you're going to benefit from the accumulated knowledge of Modern Medicine by going to the doctor to begin with, you really shouldn't deny them the choice of using the samples that they take to better the resource you've just relied upon.  It's hypocritical to expect to be able to benefit from other people's sacrifices and hard work in the past and then turn down giving something away for that cause when it in no way affects you adversely.

I also think it's a little irrational to feel like the family of the deceased "owns" the body of their loved one after they've passed on.  I'd prefer our society to be made of individuals who were OK with giving that body away for the sake of scientific advancement as that cluster of organic material is no longer in any way related to their departed loved one.  Unfortunately emotion, tradition, and ambiguous religious interpretations poison the well here, so I cannot see demanding people to follow that standard by law as a reasonable choice.  But it is, I think, an attitude which I'd like to see more aggressively promoted for the good of mankind.

Burying, burning, and embalming bodies which could be used for productive purposes does us no good; it just results in the waste of resources.

DarklingAlice

Quote from: Callie Del Noire on March 03, 2010, 10:32:59 PM
The reason I brought up this subject is that the Lacks cell line is used as a justification at times for how biomedical business works. If they had their way, anything they find would be COMPLETELY theirs. While they make the cash at the cost of the consumer.

I think this is a bad example to ask that question with. In no way was Henrietta Lacks harmed by this culture, it took almost no time, it did not change the medical treatment she received. Should she have been informed? Yes. Which is why we have those rules now. Should she profit (beyond the local and national commendations, the congressional resolution honouring her, and the naming of the cell line after her)? Absolutely not. She should have been informed, she should have been given a chance to say whether or not her biopsy could be used for research. But there is absolutely no reason I can see that she should profit from the works of others. Even if you want to say her family deserves reparations for the emotional distress caused by the secret keeping. It is untenable to say that they (or anyone whose genetic material serves as the basis for any medicine) deserve a cut of the profits.

Quote from: Callie Del Noire on March 03, 2010, 10:32:59 PM
A lot of things seem to be more business oriented than the old 'do no harm' oaths the medical community typical pays mouth service to.

It is unfortunate that only the doctors take that oath and not the executives and businessmen, who actually run the biomedical industry.

Quote from: Callie Del Noire on March 03, 2010, 10:32:59 PM
I'm not the best writer/speaker about such things. I just wonder where the 'ethics' in business went? When did curing a problem come up second to profiting from it.

That has been a problem for far too long now. And there are a ton of great ways to illustrate that issue, the largest of which is the way pharmaceutical companies put no effort into curing diseases in regions where they don't think they can profit enough (e.g. tuberculosis in Africa). However, the case of Henrietta Lacks doesn't have anything to do with that. She had a new kind of cancer. Her doctor recognized the need to study that cancer. She should have been told. The moral failing here is that she and her family were kept in the dark. But it has nothing to do with the (sometimes disgustingly) profiteering attitude of the biomedical industry.



Quote from: Jude on March 04, 2010, 05:38:12 AM
In my opinion past racial injustices should never be retroactively considered unless they directly affected the living negative.  i.e. I'm perfectly fine with reparations being paid to the surviving Japanese-Americans who suffered from the World War II Internment Camp Policy, but not to their offspring.  It doesn't matter if you're poor because your ancestors were discriminated against or because your ancestors made stupid financial decisions; it's all luck of the draw, reason irrelevant, in both circumstances you're equally disadvantaged and our goal should be to help those who are disadvantaged regardless of the reasons that were out of their control if we're trying to facilitate true social mobility (which in my opinion is what makes America what it is).

I think this question is more abstract than race, and I think the introduction of race debates to this conversation is pointless, and the continuation of those debates would be in error. Mrs. Lack's race did not factor into her not being told, rather the absence of patient's rights laws did. She had no more or less protection than a patient of any other skin colour.

Quote from: Jude on March 04, 2010, 05:38:12 AM
I also think there's a difference between legality and ethics.  Something which is unethical should not always be illegal (i.e. cheating on your spouse) and something which is illegal is not always unethical (acts of Civil Disobedience, stealing in some rare circumstances to provide for your children, et cetera).

I'm not so sure it was unethical to take her cells in this particular instance since no harm was done.  Clearly from a Utilitarian point of view the act was not only justified but morally correct; it brought about the most good in the world follow its execution.  However, I believe there could exist situations in which refusing to inform the patient could eventually lead to a problem; thus I think it should be illegal in all circumstances to take someone's biological material for research even if it does them no harm without informing.

The problem with utilitarianism is that it is not a path-dependant ethic, and therefore pre-disposed to straying from the moral.

Quote from: Jude on March 04, 2010, 05:38:12 AM
There's also a very easy fix to the problem that avoids all of the moral ambiguities and confusion--work it into law that after the patient is informed that their cells will be used, they cannot say no, then there's no reason to lie.  I think it's perfectly reasonable for doctors and scientists to demand the right of ownership over any samples they take while analyzing the symptoms of or attempting to treat a patient; after all, how could it be considered morally defensible to refuse?

If you're going to benefit from the accumulated knowledge of Modern Medicine by going to the doctor to begin with, you really shouldn't deny them the choice of using the samples that they take to better the resource you've just relied upon.  It's hypocritical to expect to be able to benefit from other people's sacrifices and hard work in the past and then turn down giving something away for that cause when it in no way affects you adversely.

Because robbing people of personal freedoms is amoral? Because people do in fact have a right to say what is done with their bodies? Because forcing people who might have personal or religious convictions against it to submit to such things is rather monstrous? Take your pick.


Quote from: Jude on March 04, 2010, 05:38:12 AM
I also think it's a little irrational to feel like the family of the deceased "owns" the body of their loved one after they've passed on.  I'd prefer our society to be made of individuals who were OK with giving that body away for the sake of scientific advancement as that cluster of organic material is no longer in any way related to their departed loved one.  Unfortunately emotion, tradition, and ambiguous religious interpretations poison the well here, so I cannot see demanding people to follow that standard by law as a reasonable choice.  But it is, I think, an attitude which I'd like to see more aggressively promoted for the good of mankind.

Burying, burning, and embalming bodies which could be used for productive purposes does us no good; it just results in the waste of resources.

This seems like an unnecessary tangent. Could be a good topic for another thread, but I don't think it should be addressed here.
For every complex problem there is a solution that is simple, elegant, and wrong.


kylie

Quote from: TriesteSo, I guess the best answer I can give you is that I don't believe Ms.  Lacks suffered the same violation of personal rights as the numerous Jews, gays, communists, etc who were Holocaust victims, and I believe that trying to judge past actions by current ethics is folly. You make mistakes, you learn from them, you revise your worldview, you move on.
Sometimes people try to brush away certain connections between historical ethical issues by saying the cases are not, to steal Callie's term, "quite the same."  The way I see it, though, is that a powerful chunk of the society has not in fact revised its worldview -- or has not done so sufficiently that I see it as satisfactory.  So to respond that was then, this is now, we're a better society, mostly serves those interests by overlooking how bodies today may be treated much like native lands yesterday -- resources there for the taking with relatively little compensation.  And yes, as you've mentioned, sometimes with compensation only after trials that many people can't afford to pursue.  Or as I've mentioned, with very little given back to the people (individual or community, depending on the particulars -- not so different to me) who originally lived with those resources close at hand. 

          Perhaps it's simply a difference in focus of scale, but if we teach people that life is all about individual responsibility and profit while claiming that gross abuses are a thing only of the past when people supposedly had completely different worldviews (and I think that difference has not been fully substantiated in practice)...   Then, I think we've brought some wool over the eyes.