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How do I ensure the results are absolutely private please?

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  • How do I ensure the results are absolutely private please?

    I would like to ensure that a FamilyFinder test will be completely private. I've reassured the tester that we could download their DNA from FtDNA and upload them to Gedmatch as a research kit with a unique e-mail. I think the chances would be slim that anyone would accidentally stumble across their kit at Gedmatch. Is that a reasonable supposition?

    Would someone explain please what we need to do to ensure they are not visible in anyone's match list at FtDNA?

    Many thanks.

  • #2
    Have you sent off the sample yet? If not, just don't sign the release form or don't send it back with the sample.

    If the sample has been sent off ... go to the Privacy & Sharing tab for that account. You should see an option (below and to the right ofi the Matching Preferences heading) to "Consent to Participate in Matching". These words are in blue, with a box alongside. Untick the box. I haven't tested this, but you could experiment with one of the other kits you manage and see whether this makes it disappear from its matches' lists.

    As has been mentioned in past threads, being invisible to your FTDNA matches will also mean you can't see them. Is the test being done at FTDNA just so that it can be uploaded to Gedmatch as a research kit?

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    • #3
      https://www.familytreedna.com/learn/...-sharing-page/

      "To access your Privacy & Sharing page:
      Sign in to your myFTDNA account.
      In the upper-right corner of the page, click on your name/kit number, and click Privacy & Sharing from the drop-down menu. The Privacy & Sharing page is displayed.

      [...]

      The Matching Preferences section is where you can Consent to Participate in Matching and select Matching Levels.

      [...]

      If you do not want to participate in matching or you do not agree with our Consent to Participate in Matching policy, make sure that the Consent to Participate in Matching check box is not selected."

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      • #4
        Thank you.

        Comment


        • #5
          Originally posted by Fern View Post
          Have you sent off the sample yet? If not, just don't sign the release form or don't send it back with the sample.
          Is this information still valid? I recently sent back a kit and intentionally didn't include the green "RELEASE FORM (OPTIONAL)".

          Today the "Kit Received" status is still shown as "Pending". Meanwhile I was surprised to receive a "Request Update" mail from helpdesk@familytreedna.com. (I didn't open a ticket, they obviously just used the Helpdesk as a means of communication.)

          This is the text of the mail, it came with a DNA Consent Form.pdf, see attached file:
          ---
          Dear Kit Manager,

          We are contacting you regarding kit MIxxxxx. We received samples, but the DNA Processing Consent Form was not entirely completed. Please print out this form and return to us so that we may check in your samples and process them in the lab.

          Your samples will not be processed and results cannot be given until we have received the completed form. The form is attached below and can be returned either by scanning and attaching it as a reply to this email or by regular mail to this address: 1445 North Loop West, Suite #760, Houston, TX, 77008.

          Best Regards,


          Malachi B.
          Information Specialist
          ---

          The mentioned attached "DNA PROCESSING CONSENT FORM" is different from the green "RELEASE FORM (OPTIONAL)" that I had received with the kit early this year. The contents of the document seem questionable to me, and the first and most important sentence has a typo, as the final word "to:" seems to be out of place. (The typo set off a "scam alarm" in my head, so I looked at the mail closely, but it seems to be legit and from ftdna.)

          My questions: Did the paper form that comes with the kits also change, is this the new one? Do we now have to agree to all of this?

          I'd like FTDNA only to "Convert your physical sample into DNA data" and download the data. The tested person is not interested in matches either. I'd like to just strike through all lines in the enumeration but the first one before sending it in.
          Attached Files
          Last edited by chr; 6th September 2018, 06:15 PM. Reason: edited out kit #

          Comment


          • #6
            I don't think the word "to:" is used improperly, as without the list in parentheses the sentence would read:
            "By signing this form, you consent to FamilyTreeDNA's processing of your DNA data and other sensitive information to:" and then lists the things to which you'd be consenting.

            The email content itself looks all right; I've had emails in the past from the Help Desk signed by a person, then "Information Specialist" or other title below the name. The suite number is different than what is shown in the FTDNA postal address shown at the bottom of the forum pages, but it could be for a different office within FTDNA.

            Even saying all that, I'd be concerned, too. It seems strange that the form you attached to your post describes
            • "other sensitive information (such as your ethnicity, national origin, and health history" < the latter would be something new for FTDNA
            • "individual traits and characteristics"
            • "optional surveys and questionnaires through which we may gather more personal information for additional insights"
            • "products related to wellness and health"
            • most disturbingly, "Tester's DOB: (mm/dd/yy):" (why would they need that?)

            You are right to be cautious, as this type of wording and topics were not on the forms used in the past.
            I suppose this new form could be referring to the existing "Vitagene" partnership (for wellness and health), optional surveys (on the user's home page, which I've never done so don't know how much personal info they ask for), and "Factoids" (found under the "Add Ons and Upgrades"). Although, the "Factoids" description says:
            "Factoids" are based on studies - some of which may be controlversial - and results are not intended to diagnose disease or medical conditions, and do not serve the purpose of medical advice. They are offered exclusively for curiosity purposes, i.e. to see how your result compared with what the scientific papers say. Other genetic and environmental variables may also impact these same physiological characteristics. They are merely a conversational piece, or a "cocktail party" test, as we like to call it.
            Overall, this new form sounds more like something Ancestry or 23andMe would send! Perhaps FTDNA (or parent company Gene by Gene) has decided to join them in its business model.

            The earlier Release Forms (green or otherwise) were all marked "Optional," and only asked for you to give permission to share your name and email or mailing address with your matches. It had blanks for your printed name, signature, and kit number, plus paternal and maternal ancestry, if you knew them.

            The address "helpdesk@familytreedna.com" seems legitimate; looking back in my emails from the Help Desk in the past, they've come from helpdesk@genebygene.com, helpdesk@ftdna.com (2013-2016), and helpdesk@familytreedna.com (as late as Jan. 2018).

            Just to be sure, can you look at the headers of the email, to see if it went through any suspicious servers, or was sent by some entity other than FTDNA? If all seems well in the headers, you may want to phone FTDNA, or submit a support request using the form on the Customer Support page (link at top right of the forums), to verify the new form.

            Or - you could simply mail in, or scan and email, the completed green form if you still have it.

            Comment


            • #7
              chr: OK, logic check.

              Who other than FTDNA knows that you sent a DNA sample to FTDNA and the email address you used?

              Who other than FTDNA knows your kit number?

              Who other than FTDNA knows you didn't sent in a consent form?

              If you object to the consent conditions then do not consent.

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              • #8
                I never received any form like that from FTDNA, 23andMe or Ancestry! If it's legit it must be something new. Why don't you call them and ask?

                Comment


                • #9
                  &quot;dna processing consent form&quot; answers...

                  Originally posted by KATM View Post
                  I don't think the word "to:" is used improperly, as without the list in parentheses the sentence would read:
                  I found a way to read the sentence so that looks to be correct. It's just a bit more nested and complicated than I expected it ... Thanks for your suggestion.

                  Originally posted by jimbirk View Post
                  If you object to the consent conditions then do not consent.
                  But I want my kit - that's already received by FTDNA - to be processed. Therefore I have to sign it (see comments below). The agreement with the tester (not to sign the release form) was based on the old form: He did not want to get involved in matching at all. So now I need to sign the new DNA PROCESSING CONSENT FORM, but keep the matching in the Preferences deactivated - which should be fine.

                  Originally posted by MoberlyDrake View Post
                  I never received any form like that from FTDNA, 23andMe or Ancestry! If it's legit it must be something new. Why don't you call them and ask?
                  That's what I had done in the first place, but since it was out-of-the-office time when I got the mail I decided to post and ask first.

                  Now I called a second time and got the following answers:

                  The mail is legit, and the new CONSENT FORM needs to be signed to start the DNA processing.
                  I asked whether the new CONSENT FORM would be included on paper if I bought a current kit, and this was confirmed. Signing the new CONSENT FORM is not only a requirement for International/European kits, but for any kit. New kits would also still contain the green RELEASE FORM (OPTIONAL), which would activate the matching.

                  Upon second thought, this new CONSENT FORM is not a big deal for me, because it's basically a summary of the FTDNA Terms Of Service and Privacy Statement. One would would have to accept these anyway when using the FTDNA services.

                  Thanks to everyone who helped!

                  Comment


                  • #10
                    Thank you for alerting us to the new Consent Form, and getting more information about it from FTDNA. I'm still not keen on giving them a birth date, though. If they want to know if a person submitting a DNA sample is over 18, they can have a checkbox for that.

                    It's too bad the person testing would not sign the green form because they didn't want to allow matching, which is the original topic of this thread. Especially if you could explain to him or her about the Privacy & Sharing settings, and how they could be set so "Consent to Participate in Matching" is not chosen, before the kit was even processed.
                    Last edited by KATM; 7th September 2018, 11:21 AM.

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                    • #11
                      I realize this was started on June 25th. Gedmatch no longer uses the same kit number as FamilyFinder, they assign you a new number. If the e-mail address you provide on Gedmatch is a valid one then your matches will be able to see it and contact you. If you prefer complete privacy, then don't upload the results to Gedmatch. Also, one of the main reasons to do DNA testing is to find relatives.

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                      • #12
                        That is one scary reading sheet - and if you now have to sign both it and the Green sheet in order to get Matches - definitely decreases chances I will see results from relatives I talk into testing. Darn!!

                        Also makes it very worrisome about using the Kits I ordered before, which do not have the new sheet.

                        Comment


                        • #13
                          Originally posted by KATM View Post
                          Thank you for alerting us to the new Consent Form, and getting more information about it from FTDNA. I'm still not keen on giving them a birth date, though. If they want to know if a person submitting a DNA sample is over 18, they can have a checkbox for that.
                          I'm not keen on providing a birth date, either. I wonder whether it's really a requirement? Time to open another request. Sigh.

                          And, like loobster, I have a unused kit (sent to me on 5 May this year) which doesn't have the new form. I guess it's possible to print the pdf that chr kindly posted here, but will FTDNA accept it? Another question for the request

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                          • #14
                            So now you have to include this new form???? WHAT A PAIN. I have a sample to send from someone who has since died.

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                            • #15
                              Originally posted by ltd-jean-pull View Post
                              So now you have to include this new form???? WHAT A PAIN. I have a sample to send from someone who has since died.
                              Yes unfortunately you do - I had this confirmed by the Helpdesk in mid September. I suggest you open a request and ask them to email you a pdf. They're adamant about requiring a day, month and year of birth. I guess any date to indicate the tester is over 18 will suffice ....

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