Cure CJD

Heather Larson's experiences in helping find the cure for CJD

What am I supposed to do now?

I have a decision to make. My father received a questionnaire from the CJD Foundation we need to fill out about my mom. I knew this was going around to families a long time ago; I just forgot about it. So we have it now and we’ll fill out it but I’ll need to obtain my mom’s medical records for the harder questions. That’s the easy part, but…

I am not sure what to do about the blood testing and this is the decision I am faced with. A request from the American Red Cross came with the questionnaire. The Jerome H. Holland Laboratory for Biomedical Research in Rockville, Maryland would like the blood of CJD patients and their families (me) for research. I am all about research and doing anything I can to fight this disease from killing more people. I’m also well aware of how much CJD has infiltrated our blood supply. However, I am unsure about donating my blood to a lab where it will be tested by “designated staff at the Red Cross” and “other research groups.”

I have privacy concerns here. My test results will not be revealed to me and I have yet to go through genetic testing, if ever I will in my lifetime. However, I am uncomfortable with others knowing my test results and not telling me. I am really uncomfortable should that information get into the wrong hands. What if I am positive for the E200K genetic marker and that information gets out? Would I be denied health insurance? Life insurance? Last year, Former President Bush signed the anti-genetic discrimination bill but I still worry.

But I could do my part for science and for our blood supply. This 30 ml blood donation will be the only one I could ever make in my life, which is pretty sad when you think about it. I’ve never given blood and no blood bank in this world would want mine since my mother and uncle both died of CJD.

So do I donate my blood to science or keep my privacy a priority?


January 29, 2009 - Posted by | Uncategorized


  1. If there is a chance that your supply could potentially help someone in the future, I’d say that it’s worth the risk. I am a volunteer with ARC and I’m pretty confident that anyone that they associate with should take your privacy VERY seriously…as that could tarnish their reputation as well.

    I’ll give you an example on a personal note…my son has a medical condition that has compromised his health and life. I as his mother, had to make a tough decision about having his arm amputated in 2007. Well, because we had no choice (for his life) but to remove this limb (below the elbow) I considered donating it to research. Yes there is a chance that his missing part is being scrutinized and evaluated by doctors and researchers and scientists around the world..and we will NEVER know if anything new is discovered. BUT, the fact that they could possibly find something…anything that could help another kid in the future, it was worth it to me. And I explained that to my son…we many never know for sure, but you can believe that IF one day a cure is found…you could be the reason why.

    Just my little two cents 🙂

    Comment by Shae | January 29, 2009

  2. Thanks so much, Shae. I can’t imagine being faced with such a hard decision about your son’s arm and having the presence of mind to donate! When I was told my mom was dying of CJD, the first thing I thought of after getting over the initial shock was donating her brain to science and I’m so glad I did. It gave my family the genetic answers we needed because it confirmed what we already suspected–that CJD ran in our family. Not only did we get it confirmed, but we found out what our familial mutation is (E200K). I like to think it also spared my family of having to donate my uncle’s brain less than four years later when he died of CJD. Getting my mom’s autopsy done and dealing with the National Prion Disease Pathology Surveillance Center (NPDPSC) definitely added stress to my life that my cousins and aunt didn’t have to go through. I don’t know if my fears about privacy are unfounded, paranoia, or completely warranted. That’s why I am asking people for their take on what I should do. I suppose we have to go through enough difficulties like this before we find answers to our questions about the medical mysteries we face. So that’s one in favor of me donating blood. Anyone else? For or against?

    Comment by omkicker | January 29, 2009

  3. Shae, I am not familiar enough with CJD to know much about E200K. Your comment about identifying the “familial” gene makes me wonder who else in your family had testing to confirm the presence of E200K in other members of your family. If the uncle who died was your mother’s brother, that would add credence to your familial conclusion, even without genetic testing of his brain.

    Check genetic information sites to find more about this gene and its effects. Does having E200K automatically mean CJD, or could you have E200K and not develop E200K? By Googling gene E200K, I found lots of information–which you may have already read. I would stick to papers and sites that have scientific credibility.

    I would also do a family health history, if you have not already done so. Check the NIH site, Genetic Alliance, or the Utah Genomics site for possible formats you could use.

    Now, to your real question: Should you donate your blood to those who asked for it?
    –Donating your genetic material to any group puts you at risk for discrimination in the future. However, if you have a family history of CJD, you already have the kind of risk that may make insurance companies reject you if they find out about it–even without your DNA. Only a DNA testing company would give you the results of genetic tests on your DNA and I would trust most of them less than I would those groups who have already asked. I also don’t know if any of them test for E200K.

    –If you are concerned about your future and your privacy, do not donate your blood to any group you do not totally trust. When my husband died of brain cancer (not CJD), I had his blood taken and saved by a University in a DNA bank. I was told I could request a sample from the DNA bank if I wished to do more with the sample (eg, DNA testing), but that any work the University did with the sample would not be reported to me. In fact, I was donating to a specific research project at the University, so I read and signed an Informed Consent. I read things thoroughly and was willing to sign. However, I have not donated my own DNA (knowingly) and have not recommended that my children donate. Will you have a chance to review and give an Informed Consent?

    –If you have been in a hospital lately, or been involved in a criminal investigation of any kind, your DNA is already in the hands of someone. Many of us have already been subjected to this invasion of our privacy. So, trying to protect our privacy is possibly a futile goal. Only the volume of information and cost of testing at site X, which gathered your sample, will keep your information safe.

    Finally, make your decision based on your wish to help others–not on your wish to protect your genetic information.

    Comment by Marie Godfrey | January 29, 2009

  4. It says on the “About” page for this blog:

    The biggest mission of all is to help find the cure in any way possible!

    With that mind, I still don’t know why you have trouble deciding. “In any way possible” means to donate your blood for the cause. Or am I misunderstanding something here?

    Comment by mlanger | January 29, 2009

  5. Hi, omkicker, my name is Donna Sobieski. As the Research Communications contact for the American Red Cross, I wanted to first of all make it clear to you that the Jerome H. Holland Laboratory for the Biomedical Sciences is actually a part of the American Red Cross Blood Services. We have the job within the organization of trying to keep the blood supply as safe as possible by anticipating possible problems that could arise, and figuring out in advance what to do about them. Our studies of CJD and other TSEs are a part of that effort.
    In response to your blog posting, I would like to reassure you of the confidentiality of your participation in any of our studies, and let you know that this is of key importance to the scientists conducting the CJD study, and to the managers of the American Red Cross and its IRB. An IRB is an Institutional Review Board, an independent committee of scientists, doctors, non-scientists, and non-Red Cross members, who are responsible for ensuring that American Red Cross research maintains the highest standards of safe, ethical and confidential treatment of any human subjects who participate in our studies. The federal government requires an IRB for any institution that does research involving human subjects. The Red Cross IRB is in full compliance with relevant federal regulations.
    Before agreeing to participate in the CJD study, you will receive a document called an Informed Consent, which explains the study and the conditions in place to ensure the confidentiality of your identity. You will have time to read the Informed Consent and ask questions about it before you decide to sign it.
    In addition, I hope it will reassure you to know the following information:
    (1) The study does not involve genetic testing of individual donors. The blood samples are being used to develop a blood test to identify CJD, rather than waiting till after death to confirm presence of the disease. This is important research, because, as you know, there is currently no such test. The people who give blood for the study are not informed of the research results because the results will not offer any medically significant information that would benefit them.
    (2) The scientific staff on the CJD project adheres to strict confidentiality requirements to be sure that any information linked to a participant’s identity is available only to the Principal Investigator (the head scientist on the study). Any other investigators on the program have no access to information about subjects’ identities.
    (3) Identifiable information is not available to any third party researchers, who receive only coded samples. Third party researchers sign a legally binding agreement regarding this condition.
    (4) Research subjects have the right to withdraw from the study and withdraw their blood samples from storage for the project, if they later decide they do not wish to participate. Samples of donated blood that had already been used would not, of course, be able to be withdrawn, but the linkage to the donor’s identity would be destroyed.
    I hope this has been helpful to you. If I can be of further assistance, please email me at

    Comment by Donna Sobieski | February 2, 2009

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