Poll: Do You Think It Would Be Unethical for the WPI to Take Tissue Samples Now

[garcia]

I still wonder who are the three people that voted for it being unethical. I suspect that what happened with "ikke2001be", were he read the question in some way and wanted to vote for the answer that allows the WPI to take tissue samples but mistakingly voted for the other option - might also happen to others. But it might still be that someone really wanted to vote to the answer that says that it is unethical. While it is that someone's right, I would still like him to say that he voted for that option - I would just like to know better who are my friends for my cause and who resists what I believe (that the XMRV/HMRV issue should be investigated until we are as sure as possible about what true here - and we are very far from that right now).

You can find out who voted for what by clicking on the numbers in the poll (or the link below):

http://phoenixrising.me/forums/poll.php?pollid=134&do=showresults

Ignoring ikke2001be's mistaken vote, the people who voted yes are:

• Cort
• JPV
• kjm

Perhaps Cort would like to answer why he thinks it is unethical to take tissue samples from patients to test for XMRV?

 

[currer]

When tissue samples are taken and tested for XMRV it would be useful at the time to keep a sample of the same tissue for a biobank - so that further tests (possibly for other viruses) could be done in future.
So yes, I think it would be fine to take tissue samples provided the procedure were not too invasive or risky. But as has been said, some tissues can be easily and safely taken. Maybe the resistance to tissue sampling has been to the idea of getting at bone marrow.

 

[Mya Symons]

Ignoring ikke2001be's mistaken vote, the people who voted yes are:

• Cort
• JPV
• kjm

Perhaps Cort would like to answer why he thinks it is unethical to take tissue samples from patients to test for XMRV?

I agree. I would like to know the thinking of the people who voted yes so I can understand the other side to the argument. I can't think of a reason why it would be unethical. Could you help us out and let us know why you think it would be unethical?

 

[Daffodil]

holy chit. you're right..it was singh who said it, according to the blog i read. funny how she still maintains her prostate cancer xmrv theory but refutes the xmrv-cfs connection. wonder if it has anything to do with patents she holds?

WTF....they just play with our lives like its NOTHING

 

[garcia]

Perhaps Cort would like to answer why he thinks it is unethical to take tissue samples from patients to test for XMRV?

It's been 3 days since I asked Cort to explain why he thinks it is unethical to take tissue samples from patients to test for XMRV. In that time he has furnished no explanation or justification for his position.

I have a few questions for Cort:

1. Can you explain why you believe it would be unethical to take tissue samples from patients to test for XMRV?

2. Given the above, what are your current views on XMRV and it's role in ME/CFS?

3. If you won't answer the above 2 questions can you at least state why you will not answer them

Many thanks,
garcia.

 

[August59]

I'm probably havinga brain fart, but wasn't there a thread started a couple of months ago about the WPI applying for the proper "paperwork(?)" to handle, store or in some way process tissue samples for research?

 

[Undisclosed]

My response is soley related to timing. I believe at this point, it would be prudent to wait for the lipkin study to be completed and published. We still don't have any replication studies and some negative studies. Biopsies are invasive and when XMRV is conclusively found in the blood of people with ME/CFS, then it would be time to move on and look at tissue samples. It wouldn't be great if WPI started doing hundreds of tissue samples and the Lipkin study was negative. When the Lipkin study is positive, clear indication would be to ramp up the testing, ramp up looking at the behavior of the virus, and research the best meds to treat the virus.

From a research point of view, I think its premature, and it would be ethical to wait for more research.

I really find it demoralizing when you post an opinion in a poll and people attribute all sorts of nefarious motivations regarding your answer. I am totally on the fence regarding XMRV -- some days I am convinced it's not a possibility on another I feel it is -- I would love to see more research and am patiently waiting along with many others. On one hand, I would hope XMRV and ME/CFS are related because it totally takes the illness out of the psychological realm which is of vital importance, but on the other hand, I don't want them to be related because treatment with retrovirals can be nasty and it's scary because it could be like HIV, meds are for life. I believe in a viral cause or a combination of viruses/DNA/environment.

I honestly didn't mean to upset anybody with my choice on the poll.

 

[Mya Symons]

My response is soley related to timing. I believe at this point, it would be prudent to wait for the lipkin study to be completed and published. We still don't have any replication studies and some negative studies. Biopsies are invasive and when XMRV is conclusively found in the blood of people with ME/CFS, then it would be time to move on and look at tissue samples. It wouldn't be great if WPI started doing hundreds of tissue samples and the Lipkin study was negative. When the Lipkin study is positive, clear indication would be to ramp up the testing, ramp up looking at the behavior of the virus, and research the best meds to treat the virus.

From a research point of view, I think its premature, and it would be ethical to wait for more research.

I really find it demoralizing when you post an opinion in a poll and people attribute all sorts of nefarious motivations regarding your answer. I am totally on the fence regarding XMRV -- some days I am convinced it's not a possibility on another I feel it is -- I would love to see more research and am patiently waiting along with many others. On one hand, I would hope XMRV and ME/CFS are related because it totally takes the illness out of the psychological realm which is of vital importance, but on the other hand, I don't want them to be related because treatment with retrovirals can be nasty and it's scary because it could be like HIV, meds are for life. I believe in a viral cause or a combination of viruses/DNA/environment.

I honestly didn't mean to upset anybody with my choice on the poll.

I agree with you KJM when you say some days you think XMRV is a possibility and some days you don't. I go back and forth also. However, I do not think a person should be able to make a decision on how or what another person decides to do with their body (or tissue in this case). So, if you wanted to check no on that informed consent form, that is your choice. You have the freedom to do what you want with your body. However, if someone else checked yes, that is also their right to do so. As far as reasercher ethics goes, I am not seeing how it would be unethical if the researchee was completely informed of all posibilities. Again, this should be up to the person with CFS/ME to decide. When these researchers say it would be unethical, I wonder sometimes if they think of us as adults capable of making adult decisions.

 

[Hope123]

There are certain rules when it comes to medical ethics and I don't see how it would play into this.

Also how invasive getting a tissue sample is is all relative. For instance, swabbing someone's tonsils with cotton (ala the XMRV+ German study) vs. taking a Pap smear vs. biopsying a lymph node vs. taking out your liver. All are examples of getting a tissue sample. I think most people would say the first one is fairly non-invasive although it might be uncomfortable while millions of women, while not enjoying Pap smears, endure them for preventive purposes every year with the majority of those Pap smears showing nothing (e.g. being normal).

I would think Singh would get on top of this considering tissue diagnosis is a fairly solid method vs. other methods and she herself said that results might differ according to the medium (tissue vs. blood). If she doesn't do it, someone else should.

 

[gregf]

Anyone who has read and understood the macaque study, knows we urgently need to be looking
at tissue samples, rather than blood. Especially with all the neg blood studies, at the moment.

I do think it is a mistake to "out" and query people who voted against the majority.
It sets an expectation for future polls, that voting minority will mean one is "outed".
Polls should be set so the way people vote remains private.

 

[Undisclosed]

Anyone who has read and understood the macaque study, knows we urgently need to be looking
at tissue samples, rather than blood. Especially with all the neg blood studies, at the moment.

I do think it is a mistake to "out" and query people who voted against the majority.
It sets an expectation for future polls, that voting minority will mean one is "outed".
Polls should be set so the way people vote remains private.

Gregf -- I didn't mind being one of the "outed" ones. If people want to know why I voted a certain way I will always be happy to answer. I do agree though, that some people may choose not to vote with a minority opinion because they are opening themselves up to name -calling. I guess the problem with polls is that what is being polled is often open to interpretation. For example, in this poll, the term unethical is open to a lot of interpretation and so is tissue samples. I would have answered the question differently if the question was something like "do you think it would be unethical for the WPI to take non-invasive tissue samples with informed consent".

kjm

 

[leela]

unethical? i would think it was essential!