Friday, June 10, 2011

X & Ethics: an open letter to Science Magazine



Dear Science Magazine,

Before you accepted their landmark XMRV study for publication in your October 2009 issue, you demanded months of verification work from Lombardi et al. They ran and re-ran the tests you required, and the result was conclusive: a very strong (~90%) presence in CFS patients of the newly identified retrovirus that had been linked to prostate cancer.

Completely satisfied at last, you published.

Now, less than two years later, you have suggested the authors retract that study, on the basis of other scientists' inability to find XMRV or related MLVs in strong connection with CFS.

Retract, although it has been less than two years since the publication of the initial study, and good science takes time?

Retract, although the negative studies were not subject to months of your own personally-overseen confirmation as was the Lombardi study before its publication?

Retract, although the negative studies did not replicate the Lombardi team's procedure in spite of the willingness of scientists on that team to facilitate replication of their methods?

Retract, although the studies unable to find XMRV or related MLVs in CFS were also typically unable to find them in healthy controls, whereas both Lombardi et al and Lo et al found close to 4% positive among healthy controls?

Retract, although many of the authors of articles questioning Lombardi et al are not even academically qualified to comment on issues of retrovirology?

Retract, although Dr. Harvey Alter stated that his study with Lo et al---a study involving participants from the NIH and FDA linking related MLVs to CFS---was confirming of the Lombardi paper?

Retract, although there are further studies in the works under the supervision of highly reputable scientists which may yet further confirm and expand what has already been learned about the relationship of CFS or ME with MLVs like XMRV?

Retract, although alongside more hasty negative papers the positive confirming studies are coming out now that enough time has elapsed for some of  the more rigorous science to be done, including several papers just presented at the 15th International Conference on Human Retrovirus in Belgium this week?

Retract, although scientists have suspected for decades that the activity of symptoms in CFS (more commonly known in other English-speaking countries as ME) is consistent with retroviral infection?

Retract, although it seems strangely unscientific and perhaps even political that the suggestion that XMRV is a mere lab contaminant has been made only in connection with its appearance in patients with CFS and not connected to those with prostate cancer? 

Retract, although such a retraction---and even your suggestion that it should be made---may have a chilling effect on funding of further studies that could finally prove or disprove the point?

Retract, although an estimated 17 million people worldwide are already ill with this devastatingly disabling and often deadly disease and millions more may become ill, who might not have, had further study been pursued in this area?

Those last two points are where the ethics go beyond those of most fields of scientific study and enter the morals of human life. With 17 million plus human lives at stake, do you really want to make a move that could dampen funding for further study?

XMRV is hard to find. Lombardi et al showed you a needle in a haystack. You said, "Wait, are you sure that's a needle and is it really in that haystack?" They showed you again. And again. You said, "Okay, We see that needle in the haystack and we'll tell the world you showed it to us."

Now other scientists are saying, "We can't find a needle in a haystack," and you suddenly say, "Well, it probably wasn't really a needle, or it was in some other haystack," and you ask Lombardi et al on that basis to retract their paper.

I'm not saying XMRV causes CFS or ME, but I'm certainly not saying it doesn't. I can't say either, if studies are retracted and science is stopped.

I don't want a magic charm. If I wanted a magic charm I would write to J. K. Rowling. I want science. I am writing to a magazine called Science.

As a respected publication in your field, you are trusted by your readers to exhibit the highest journalistic ethics, and as scientists, I expect you to promote, not hinder, science.

Science, please live up to your name.

Sincerely,
Kassy Fatooh

21 comments:

  1. Anonymous10 June, 2011

    Brilliant!

    ReplyDelete
  2. Yo dawg I heard you like science so we put some science in your science so you can science while you science.

    ReplyDelete
  3. Anonymous10 June, 2011

    Excellent letter! Thanks for writing/blogging.

    ReplyDelete
  4. Kassy, perfectly done! Once again you cut right to the core of the issue and lay it out for us. Bravo!

    ReplyDelete
  5. Oh well done, beautifully written.

    ReplyDelete
  6. Well done! You hit the nail on the head with some extremely good points, there! I wonder what they would answer...

    ReplyDelete
  7. WOOT! Where ethics enter morals, indeed!!

    ReplyDelete
  8. Anonymous10 June, 2011

    simply brilliant! Thank you for speaking so eloquently about something so important to so many people- I hope Science take note!

    ReplyDelete
  9. Hilde Devos10 June, 2011

    Great Blog!

    ReplyDelete
  10. Anonymous10 June, 2011

    Sometimes I really wonder how independent Science and the scientists are...

    ReplyDelete
  11. Brilliantly put and so powerfully written...thank you.x

    ReplyDelete
  12. Sue Howley10 June, 2011

    Very well said, Kassy. You took the words and put them right into my mouth :-) Wish I were as eloquent, we are lucky to have spokespeople such as you. Although, my wish for you would be that you had no reason to have to play that role x

    ReplyDelete
  13. Caroline Davis10 June, 2011

    Strongly argued. But will the have the balls to hear you?

    ReplyDelete
  14. leelaplay10 June, 2011

    great piece. thank you.

    ReplyDelete
  15. Pat Mayer10 June, 2011

    You have the perfect touch. I just love this blog post. You hit the nail on the head...or the needle in the haystack!!! Amazing, Kassy.

    ReplyDelete
  16. thank you for writing this ... really well said !

    ReplyDelete
  17. Terrific job!

    I had planned to blog in support of the WPI today but life - and a car repair - got in the way. I'm thankful you were able to so clearly state the issues. It will inspire me compose my own blog post, late though it may be, as soon as I recover from the post-exertional he!!.
    Thank you!

    Ash
    CFS/FMS 15 or more years, and XMRV Positive for Antibodies - and you don't have antibodies to a lab contaminant.

    ReplyDelete
  18. Anonymous11 June, 2011

    Bullseye, this time "Sience" have to choose either seeking the unpopular truth about a possible connection between XMRV and CFS/ME, or support the forces that try to hide the connection. There is still a chance that there is no connection, but no way to continue overlooking the possibility. All serious argumentation in this case seem to come from those that believe there is a connection, and they usually get amateur answers back that is not supported by relevant studies.
    Why can't the sience world answer questions like: Can you find antibodies in a positive labresult without the virus getting in the blood before the blood leaves the body?
    Is there a nonhuman lactic acid in the patients? Does the patients have high levels of adrenaline? Is there a protein leak from the blood to the spinal fluid (α2-macroglobulin, Orosomucoid, Pigment epith.-derived factor, Keratin 16, BEHAB)?
    Is there a reduced blood flow in the mid brain? Will scientists start physical testing of ME/CFS instead of blaming psychic reasons?

    ReplyDelete
  19. Anonymous11 June, 2011

    keep going!

    ReplyDelete
  20. Absolutely bang on Kassy, fantastic!! Thank u xx

    ReplyDelete
  21. All the above Kassy and then some! Excellent letter, brillaintly executed. I hope that Science has the decency to reply to you. I hope they prove to the world that, unlike the manure heap of psych CFS related research, there'll be no politics tolerated behind this Science.

    ReplyDelete