Invasion of privacy? Drumming up business?

cb123
cb123 Member Posts: 320
edited April 2016 in Genetic Testing

This outfit drew 4 tubes of blood the other day and has my family history per the new patient documents. They also have the results of my BRCA test. I just don't think I need to be giving them names, addresses and personal medical information of my family members. Here's what the website says:

~

"You are about to complete an important Questionnaire which will help your provider assess your and your family's cancer risk profile. Try to have as much information about cancers in your family before completing, though you can return and edit at a later time.

If you have been diagnosed with cancer, it may ultimately help explain the cause and provide treatment clues. If your family has multiple cases of cancer, it may help identify which genetic test could be performed. This could help identify at-risk family members who can be offered risk-reduction measures.

By proceeding with this Questionnaire, you will be able to print a high-quality Family Cancer Pedigree (Family Tree) to share with all your providers and family. The information you provide will be analyzed by our Genetic Risk Assessment Team, and your (NAME Deleted) Oncology Provider will be sent a Triage Recommendation if any actionable risks are identified.

This information will kept confidential and secure along with all your other health information collected by (NAME Deleted) Oncology. No genetic counseling is inferred.

If you wish to proceed to the questionnaire, please click 'Next' below. Please check this box and exit the questionnaire if you do not wish to participate."

~


I chose not to participate. We have already identified my type of cancer and they've already offered up a treatment plan. My family has been notified by me and has access to my medical records.

I just don't think like these people do. I find this incredibly invasive of my family's privacy and morbidly income generating for this medical organization.

cb

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Comments

  • gracie22
    gracie22 Member Posts: 229
    edited April 2016

    It is invasive, particularly in view of the current political climate in the United States. Who knows how this will be used, particularly if the advances of the Affordable Care Act are rescinded and existing medical conditions become a bar to health insurance as they were in the past. Advising of familial cancers without specific identification should be sufficient.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2016
    I totally agree with Gracie. I'd express your concerns to your oncologist or whoever it was that sponsored that.
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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    I know 2 of the 3 main cancer care providers in this metro area operate like this and it was part of the reason I refused the oncotype test in 2014. Once I found I could refuse this and still have the oncotype I moved forward.

    It's like they're building up their pipeline for their sales reps to warm call.


    cb

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  • Maya15
    Maya15 Member Posts: 323
    edited April 2016

    There's something wrong with this company -- I agree this is none of their business! I had the genetic testing done and was never asked for this info. They took blood and genetic counselor asked me about family history of cancer, but names were never mentioned. Also the counselor said results are released to me only. It is up to me whether to tell my relatives anything. They said if anything came back positive they would give me a letter explaining possible implications for my relatives, but again it would be up to me whether to pass it on. Everything was negative so it wasn't needed. I would talk to your oncologist, you should be able to get your blood tested if you want without providing personal info like this to the genetics company. Next thing you know all your family's info would end up in a database somewhere to be used by god knows who!


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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    The questions don't ask for the relatives names. The tree is done by relation-paternal grandmother, maternal aunt, sister, etc. They don't know the names and don't have contact info. It would be up to you to tell other family members if you tested positive for a genetic problem. The patterns they can pick out from which relatives in your extended family have cancer or other diseases suggest what gene may be involved. There is a lot more to genetic counseling & testing than just getting a BRCA blood test.

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    They're specifically asking for names.

    I'm meeting with them this afternoon and looking forward to receiving copies of my test results. I am not interested in sharing my family with them. They seem to want to offer my at risk family members risk-reduction measures.

    This office is a branch of the MO and the Gynecological Surgeon/Oncologist that the MO referred me to. Over 70 physicians and almost 40 offices in state.

    I know a lot of people do everything their medical professionals tell them to do, I can only do what I feel is right for me. This feels like 'fool me twice' if I let myself give my family info to them. MO takes Pharma money was 'fool me once'.

    I'm also aware that many people don't have this care available, I feel somewhat ungrateful in my refusal of their services. I am fortunate that I have a choice.

    I'm still working with test referrals from this group for my PET scan, MRI and bone scan tests. I've made an appointment with a different oncologist's office, outside of this group, about 25 miles from my home. I'd love to be treated closer to home but I'm not a fan of this local monopoly or the MO I was referred to.

    It feels like WalMart to me. I'm sure they've negotiated low everyday prices, made possible by their size, with my insurance company and have become the preferred provider for referrals.

    cb

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2016

    I didn't have any of these situations while dealing with the Geneticists at University of Michigan.

    It has been a meaningful experience - not thrilled that my sister and I have Chek 2 ll00 delc but

    glad to know why we both got breast cancer at age 55.

    I'm sorry for all the invasion of privacy you have had to deal with, and appreciate your writing about it!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    I didn't have any of that through the geneticist at UTSW either. Never heard of them asking for specific names or contacting anyone else. Seems to me that would be a HIPAA violation.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2016

    I just completed the genetic counseling questionnaire at Universith of Michigan and they did ask for names and dates of birth, but never addresses or contact information, and it was used to help them design the "family tree" and to keep things straight. They also asked for medical history which they explained help them determine MY risk (not that of my family members). They never asked for contact information and even noted that HIPPA prevents them from sharing any of my test results. I'm surprised they'd be allowed by law to contact any of your relatives regarding your medical tests without your express consent

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    If you haven't gotten your test results you don't even know that there is anything TO share with other family members. I would hope that if the results turn up a genetic syndrome you would want to share this potentially life-saving information with other possibly affected family members.

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    I do have the BRCA results from my surgeon's office. I am so interested in this appointment today. When I shared my positive BRCA results with them over the phone yesterday the woman seemed almost giddy as she asked for specific details from that test.

    I don't have any idea what tests they performed or what the results might be, but I am very anxious for this appointment today. I can only assume this genetic counseling is related to the blood tests. I asked and the woman scheduling me didn't know.

    There are a whole slew of tests I'm scheduled for from this medical group including MRI -Thoracic/Spine, MRI - Brain, PET scan, Total body bone scan & MUGA scan. Then the gynecologist will have tests of his own to run.

    I have made my generation of my family aware of this situation and they have access to my medical records. They already had a clue as mine will not be the first death but a 3rd generation cancer death. I have left it to them to discuss with their decedents at a time they feel is appropriate. Some of these children are still children and may not need to know this just yet.

    I have also made Youtube videos and a corresponding Facebook page filled with info and links that I find useful along my way. In case those kids might want to look at them. When I told this to the woman scheduling my appointment she was THRILLED and couldn't wait to see what I had come up with, asking me to bring samples to share.

    I find the whole thing to be Orwellian or certainly the early stages of an Orwellian future. But I do see where others may welcome the assistance of such a service. I just don't think like that.

    cb

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    It was a very sad day for me, the day before DMX surgery, when it was confirmed that my cancer is genetic. I was deeply saddened for the generations to come.

    The 50/50 chance that my siblings are carriers gives me no peace for their children as there's an old phrase, "sometimes it skips a generation."

    One of my younger sisters has already died of this and I was never made aware of anything genetic. I have made arrangements with my family for all this genetic info to be available and find no need of assistance from a medical corporation who wants to "... help identify at-risk family members who can be offered risk-reduction measures."

    Bilateral Mastectomies for EVERYBODY!

    Here's hoping research into immunotherapy or anything else saves those bosoms.

    cb

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    I'm so sorry. I didn't realize you already had a confirmation on BRCA.

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    Nothing to be sorry about, I actually got it in writing yesterday but I got the phone call 3/15/16.

    I'm just the sort of person who questions authority. I read release of information forms and I know that even with HIPPA these offices are allowed to share certain information with their associates. I read their About Me page on their website.

    People get marketed to in very interesting ways anymore and I just don't feel that I'm going to roll over and give it to them My and my familiy's information is out there, let them work for it.

    I got a letter from a company marketing me some credit repair. They say this same medical corporation had their computers hacked into and I had seen one of their MOs in 2014. I had seen one of their MOs in 2014. Hacked or not? I don't know but some credit repair guys got my contact info in relation to one of their oncologists.

    cb

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    Guys,

    I'm sorry to have to say that there were no blood test results available, no oncotype, nothing. I'll have to get the results of the blood tests from my MO. Just some genetic counseling for me and my family if we want it. I accepted the counseling and listened to the ladies go over the info on the BRCA results sheet.

    The only personal info they had was a list of my upcoming appointments and the BRCA info I gave them. I wonder what they would have used to counsel me with had I not given them a copy of the that?

    They offered a letter of genetic explanation and will happily send it with an explanatory family tree to any of my family members. They're also happy to assist any of my family members with genetic testing anytime. I declined for now but would certainly keep their contact info handy.

    The good news is, I got a call back from an MO who is on my insurance, not with this group, close to home and doesn't take Pharma money. AND I did get a lovely drive to Scottsdale with good company, we picked up some cannolis for later tonight.

    So a good day for a drive to Scottsdale.

    cb

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    Sorry Guys,

    I'm abandoning this post. Feel free to carry on without me.

    cb

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