XMRV Ethics
Hi everyone,
I wish to discuss ethics. This issue is going to arise again, so I would encourage everyone to join in and discuss the ethical issues, without talking about the specifics of this case, so that we all have a better understanding. I am happy for anyone to disagree with me on any point, I am not into attacking people, I just debate arguments.
Please understand that I am happy for the thread in question to be closed if it is in the best interest of patients. Supporting the WPI is important to me. Supporting ME/CFS research in general is what I have been trying to do for eighteen years. So it is probably to our benefit to support any action the WPI requests, or is clearly in their interest but not prejudicial to the science.
However, there are journalistic ethics here. It may or may not have been right for this information to have been released originally. I understand that, but don't want to comment further because I don't have the facts.
If a person sends me a private communication, I try to treat that as private. I am keeping lots of things like that secret at the moment (no, don't ask!). My biggest risk is that brain fog will facilitate my saying something I shouldn't, not that I will deliberately release information that is privately sent to me. I typically consider if the information is in the public domain already before I say anything, although you should know that not everyone is happy with my position on this, and I respect their right to disagree.
If I get a mass mailed communication, and it is further mass mailed from other information distributors, then it is public information. It doesn't matter why it was released, or if that release was ethical.
It is not a question about whether or not it is ethical to release that information. It is a question about whether or not it is beneficial to release the information. This is about right to know versus the right to protect our medical interests.
Please understand that revealing personal medical information about someone without their permission is always unethical, I am not debating that. I have been written up in the research literature myself, and I was given an alias as it was a case study (no, don't ask).
Let me further clarify. If someone in any other situation has a story, and reports it, its hearsay. Its not corroborated, but it can be reported if that person volunteers the information. The other party has a right of reply, including a "no comment", or "we will reply in a few days" or whatever they choose. At that point however, the news is in the public domain.
On the other hand, there is the public interest test. On a global scale, the world has the right to know. This is an extremely serious issue, and evidence that further world-wide understanding is important. It is however clear that any material presented has to be clearly labelled as hearsay or opinion, or an unsubstantiated claim in these cases, and not presented as fact. To me, its all an hypothesis till proven, but when I am arguing about something I treat it as a working hypothesis, and so testable.
But then there is our medical interests. I just turned 50 and I am still waiting to start my life, because I became ill at a young age. I am massively in debt. The XMRV research is my best chance of a treatment so far, and possibly the last chance in my lifetime. It is important to me that nothing I do impedes that. More broadly speaking, it is imporant to all patients to support this research (which brings up another debate about what we are doing to support research, but that belongs elsewhere). It is even more important to support research if you believe the XMRV hypotheses are wrong. Only research can disprove it, as only research can prove it.
Those who simply deny that the XMRV research can be right are not serving any public interests. XMRV either is or is not cause or co-cause of ME/CFS. This is an objective certainty. We need to find out which it is, this is a research imperative. Skeptical commentary from scientists is important, but it is equally important to be skeptical of the skeptics.
Let me say that, personally, I think the XMRV research is extremely compelling, enough so that I agree with Alter in that if this virus is proven to be non-causative, we should be looking for a similar virus - but lets not give up on this one just yet, the evidence just keeps getting stronger.
So to me it is not unethical to propagate information that is already in the public domain. It can, however, not be in our best interests to do so. That is about the collective interest of all patients in the first case, and the world in the second case. This is an issue of politics, advocacy and promoting our interests, and it is these issues that determine whether or not something should be pursued.
In any case I completely support Cort. I have yet to see him do anything unethical or clearly wrong, and he is an asset to our community and advocacy.
Thank you for your time and patience,
Alex Young, aka alex3619