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

[Mya Symons]

Do you think it would be unethical for the WPI to take tissue samples now (to test for XMRV)?

 

[ukxmrv]

I think that they may already do so. Individuals with breast cancer etc have already been approaching them. What is happening with then I don't know.

 

[floydguy]

No, but I would like a review of researcher ethic standards. It seems kind of warped to me.

 

[redo]

How could it be unethical to take a sample (if someone wants a sample taken on themselves)?

 

[Mya Symons]

How could it be unethical to take a sample (if someone wants a sample taken on themselves)?

I agree. I think that this should be up to persons with CFS/ME to decide. As long as they are made aware that there is controversy surrounding whether or not XMRV is a human infection or a lab contaminant and that there is a possibility nothing will be found in their tissue sample, then it is not unethical. It would be informed consent. What would be unethical would be to take more time to come to a conclusion when there are people out there who have been suffering for so many years. If we could take tissue samples, we could end this back and forth now.

 

[Nielk]

I would be willing to give them my tissue sample.

 

[omerbasket]

I wonder who was it that voted for it being unethical.
How is it unethical?
I would agree right now to give them tissue samples. In fact, I believe that taking tissue samples from some places, such as the colon (in the part that is closer to the rectum, at least), is almost as safe taking a blood sample from the patient, and probably at least as safe as taking a pill of 500mg of acetaminophen.

 

[Sushi]

I can't see the ethics consideration if a patient gives informed consent or requests it. De Meirleir is finding XMRV by PCR in stomach tissue. He uses a routine procedure (endoscopy) that is done regularly for countless gut issues. They just take a few tiny tissue samples from different areas.

So, there is precedent for this and it allows a doctor/researcher to look for other pathogens like HHV6 as well.

Sushi

 

[dannybex]

What Sushi said.

 

[liquid sky]

As long as there is informed consent. We need more research and there are many volunteering o participate.

 

[garcia]

The question is a no-brainer.

I strongly suspect the 3 people who voted no are not interested in solving me/cfs and have some other agenda for being here.

 

[ikke2001be]

Hi,

I voted no, but it was because I misread the question (damned brainfog!!!) What I read was : DO YOU THINK IT WOULD BE BENEFICIAL FOR THE WPI TO TAKE TISSUE SAMPLEES NOW. So ofcourse I voted YES.

My mistake...

Regards,

 

[heapsreal]

if people are willing to donate tissue sample, i say go for it. could be a painful procedure but i think its worth it. I just wish they would put more of their findings out there. Sick of hearing all the bloody negative ones that arent real replication studies.

cheers!!!

 

[ukxmrv]

For people who are dying then this may be their only opportunity to find an answer. If they test neg with blood but have a tumour sample for example.

 

[Francelle]

.....and why just the WPI? Any research facility wanting to get to the truth of XMRV prevalence, fact or fiction, should be able to set up a study with all the appropriate ethics research protocols.

As to GI biopsies these get taken nearly everytime anyone has a gastroscopy or colonoscopy done. No pain whatsoever! Other types of tissue biopsies may be a little more complex however.

 

[Daffodil]

im not sure i understand the question..why would it be unethical to take tissue samples?

 

[caledonia]

A scientist (can't remember which one) has stated this.

 

[Mya Symons]

A scientist (can't remember which one) has stated this.

I was going to say the exact same thing Caledonia. Was it Sihng? I can't remember.

 

[omerbasket]

A scientist (can't remember which one) has stated this.

They can be good scientists with good intentions, but I think they have no right to tell us whether it's ethical to take biopsies from us or not. We know the situation, we are not stupid. Perhaps they should say, before taking the biopsy: "The XMRV connection to ME/CFS is controversial and there are many scientists who think there is no connection, and it's all due to contamination. Knowing this, would you still like to give us some tissue biopsies?". I would answer: "Definitively". Others might answer: "No". It's my right, and it's their right.

But it is not the right of a scientist to say that it's unethical - because it should be our choice wether we want to do that (in order to do something that we believe might contribute to finding answers for our disease - and even if these scientists don't believe that, they might be wrong and we might be right).

 

[omerbasket]

The question is a no-brainer.

I strongly suspect the 3 people who voted no are not interested in solving me/cfs and have some other agenda for being here.

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).