HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   The Army of Women cancelled webinar response from Dr. Joanne Weidhaas (https://her2support.org/vbulletin/showthread.php?t=62246)

'lizbeth 11-30-2014 12:21 PM

The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
With the Susan Love Foundation, from the start we discussed with her offering results to women, through the study. She said, no, but it would be great if you could offer them outside of the study however you can do that. So we communicated that to everyone that asked throughout the course of the study, and worked to figure out a solution. After they announced the webinar, we spoke again with Susan and she agreed again that we should offer results outside of the study, and we told her about mirakind and our plan to offer results that way. She said she was very pleased. So in an email, from me, from Yale, to the AOW group, I told everyone again that they could not get results through the study, but that we had launched a non-profit, called MiraKind, where people could go to get their results. Idid put in a link, primarily because the group, overall, is not particularly tech savvy. And I did tell women the cost, because I didn't want them to be surprised. But I NEVER sent any email to ANYONE from MiraKind or MiraDx, ever. Anyways, Susan Love, on total misinformation herself, cancelled the webinar and said the company (or companies) had solicited people. Which never happened! It was a shortsighted overreaction, based on bad info. In the end she kind of admitted it, but it was too late, she had sent the email with misinformation. Many many women were pissed at her. They sent her angry emails and she spent a couple of weeks calling them and telling them that she would come and give a talk in their town, help them find non-profit support for their causes etc. She never followed through. This is all information from women that told me what happened. So anyways, all of this wasn't about us, it was about her, but, if someone wants to believe differently, it's ok. We aren't out to villanize anyone, we just are doing what we are doing, and we always, always, do the right thing for the breast cancer survivor. That I can 100% confirm.

'lizbeth 11-30-2014 12:22 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
23 and me is a GWAS platform, which is known to have about 10-15% error. That is just a fact. You can find out your BRCA results there as well, but is 10-15% error ok? Obviously not. We have a test that studies just KRAS. It is 100% accurate. Any clinical result has to be 100% accurate, or pretty darn close to that. That's why 23 and me isn't approved to deliver clinical results, and in fact was pulled from the market last December, for that very reason.

'lizbeth 11-30-2014 12:23 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
$295 is literally what it costs to run it. The market cost is more around $2000, although we have kept that down as well to $595. However, we do have financial assistance, and haven't said no to a single person that's applied with any type of need. And truth be told, getting results isn't a decision that should be made lightly, which is another reason we don't just do it for free. It is actually serious information. While we have been raising funds through the non-profit, to help cover costs, we will be using it for financial assistance at this point and running studies. I don't know if we will lower the overall cost. I have mixed feelings. We have never said no to someone that wants results, but I don't want people to take it lightly.

'lizbeth 11-30-2014 12:24 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
There are over 30 publications, from all over the world, supporting the importance of this mutation. KRAS is not only real, but important for patients.

sassy 11-30-2014 02:25 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
'Lizbeth,

Is this Published from a particular group?

'lizbeth 11-30-2014 08:00 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
This is directly from Dr. Weidhaas. I emailed and asked her questions when Rhondalea and I had a spirited discussion about the KRAS study.

rhondalea 11-30-2014 09:37 PM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
Quote:

23 and me is a GWAS platform, which is known to have about 10-15% error. That is just a fact. You can find out your BRCA results there as well, but is 10-15% error ok? Obviously not. We have a test that studies just KRAS. It is 100% accurate. Any clinical result has to be 100% accurate, or pretty darn close to that. That's why 23 and me isn't approved to deliver clinical results, and in fact was pulled from the market last December, for that very reason.
23andMe used the Illumina OmniExpress Chip. I think they may now use the Omni5 or similar. This is the spec sheet:

http://res.illumina.com/documents/pr...ome_arrays.pdf

The most recent error rate is approximately 0.014%. The highest error rate I've ever seen postulated (by a non-professional, no less) is 0.03%, and that was several years ago.

23andMe was spanked by the FDA because of its reports, which were largely based on GWAS and its own research, not because of their chosen chip. What was "pulled from the market" were the health reports, and even that limitation only applied to new customers. As I mentioned, my health reports are still available to me on the site. The raw data and the ancestry matches continue to be provided to everyone. The Illumina chips are used industry wide, and there is no chip that is 100% accurate (although some come pretty close), just as there is no lab test anywhere that is 100% accurate (speaking as one whose mammogram and core needle biopsy failed to detect her cancer). Remember that Genentech partnered with 23andMe for their Avastin study. Pfizer recently partnered with 23andMe to do an IBD study. That's just a small sample of the research being done in with 23andMe's data. What are the odds that any of these partnerships would exist if the error rate were as high as she claims?

I offer this for clarity on the subject on 23andMe only. I confess that I skimmed through, and it caught my eye, but I have not read the rest of the thread because I have no interest in what JW has to say.

'lizbeth 12-01-2014 10:13 AM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
Look, I spoke with an employee of Illumina yesterday. It had nothing to do with our current conversation, they called me about an unrelated topic.

Of course, they are quite familiar with 23andme. We didn't speak of the accuracy of the testing. However, even with free cancer testing, employees must have the tests ordered by their physician.

I suspect that the past accuracy of the testing has been an issue. The current chip might be as accurate as you mentioned but it is a mute point. 23andme is not FDA approved to offer this service to patients. The only information available is for family research. And it takes more then equipment for accurate testing. The staff member and company procedures are a critical component of accuracy.

I checked on clinicaltrials.gov and there are only 2 trials currently being offered by 23andme. An observational study with Avastin based on questionnaires. I've taken research class and my instructor would not consider this type of study as valid as others. The Parkinson study sadly does not look like it fully enrolled and is close to the primary end point.

I did notice that 23andme is still advertising on cancerforum. They haven't learned their lesson yet. I suspect they will get stomped by the FDA again soon. You are enthusiastically looking for story from folks on "how they dodged a bullet". Guess what, I've seen the other side of this picture. Like Lani says, if the puppy can't get out the front door, its going to get out the window. Some patients need a strong doctor to push them toward making the best decisions.

You may be done with JW, but I'm just getting started. She has taken a new position at UCLA. She has a 10 year observational study that has just started with the KRAS variant. This is based on actual DNA information from participants. She is studying an area that can have an impact on improving standard of care. She is actively looking for new information. She is on the bleeding edge of technology. This is exactly the type of researcher I support. I do not expect her to be perfect. I've emailed her and her heart is in the right place.

I'm going to promote Dr. Weidhaas. I support her research into breast cancer, and I support her as a female in the difficult profession that she has.

You keep trying to build credibility for 23andme by tearing down other researchers that have little or nothing to do with this companies situation. It is not working and it is only making 23andme look bad. When this company has some legitimate medical information, please share. Otherwise can you please disconnect it from the KRAS variant research. It really has little or nothing to connect it other than they offer nonmedical testing that includes KRAS variant for cheap.

rhondalea 12-01-2014 10:48 AM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
I have not tried to build credibility for 23andMe. I didn't even start the discussion of 23andMe except to mention that I, personally, had genotyping through the company. You then had questions, so I tried to answer them. Somehow, that progression of answers turned into an accusation that I was "promoting 23andMe."

I will not argue the points you wish to make in the first few paragraphs of your post. I've followed 23andMe and its supporters and critics pretty closely since I joined, and as a factual matter, I disagree with your conclusions. Nonetheless, this is really not the place for such an argument.

However...

I like 23andMe, just as I like the Personal Genome Project. I'm committed to both. Neither one has anything to do with Joanne Weidhaas and why I am angry with her and why I will never again participate in any of her studies. I joined her study in good faith, and I felt she let everyone down. Others are free to feel differently, but no one is free to tell me that I must feel as they do. Nor is anyone free to tell me that I must keep my opinion of what she did to myself.

As for casting aspersions, she seems to have done a stellar job of that in misstating the facts about 23andMe, but I'm not entirely sure that's her fault. It may be the way the question was put to her, and frankly, I'm not sure why 23andMe was even mentioned if the subject is why she charged research participants to receive their DNA results. I talked about her in the context of my own displeasure with her actions, not in the context of comparing her work to that of 23andMe. The discussion of 23andMe came later--in passing--and neither has anything to do with the other, but the mention of it ballooned until it became the entire discussion. Very unfortunate.

'lizbeth 12-01-2014 11:51 AM

Re: The Army of Women cancelled webinar response from Dr. Joanne Weidhaas
 
Rhondalea, whether you realize it or not, you brought up a lot of the information on 23andme. I thought that you were discussing The Genome Project that my friend is participating in. I asked questions to get to the bottom of why you were linking it with the KRAS variant research. I now see the motivations behind the conversation.

Dr. Weidhaas did not charge study participants to receive DNA results. Like most studies the results are not directly disclosed to the participant. In a blind study the testing results are linked to a number, not an individual. Studies were designed this way to protect the identity of participants. If the study was originally approved this way, then she would not be allowed to disclose the information.

She made arrangements for those who participated to have a physician ordered test outside the study for a reduced cost. Unlike those who were offended, I personally greatly appreciated this effort.


All times are GMT -7. The time now is 04:31 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2021, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021