various privacy issues

[AuntyDud]

Some of these issues apply more broadly, I'm sure, but they are arising for me in connection with YDNA projects so I'll ask here.

First, I am not disclosing either my own name or my two testees' names (two different surnames/families) anywhere on this site. I don't put identifying personal information about myself or anyone else on the internet, or disclose it to strangers, anywhere. That's the non-negotiable.

However, I do want to be contact-able by people who match with my testees' YDNA results (the only testing I have had done at present).

So my solution has been:

- the testees' names in the account info are coded in a way that is meaningful to me
- the "most distant ancestor" info gives the surname in question and a relatively exact date and place of birth for that ancestor (e.g. "Smith, c1755, Lancashire, England")
- I have an anonymous online email account that I use for the purposes of these two accounts that is accessible to matches

So the public personal profile that shows for my account reads (after much fiddling based on experience since receiving results and joining projects), taking the hypothetical Smith:

Mr xxxx yyyy
my email address
Haplogroup: R1b1a2, Shorthand: R-M269
Surnames: Smith [Lancashire], Jones [Wales]
(Jones was the wife of Smith c1755, just for good measure)
Most Distant Ancestor: Paternal: Smith c1755, Manchester, Lancashire, England
(it took me a while to figure out that date and place needed to go in that slot along with name, in order for the info shown in YDNA surname project results lists to be useful)

As far as I'm concerned, this gives any match the information they need to do a preliminary assessment of the match. They don't need to know the testee's name, and they don't need to know my name. We can discuss the match by email without disclosing that info as well, to start with.

The problem arises when the testee's results are shown in YDNA project charts. This testee has joined three projects so far:

- the ancestral surname Smith which may be incorrect
- the surname assumed in the 19th century, say Cholmondeley, which may be simply faked or may reflect an NPE, i.e. non-Smith father, involving a father named either Cholmondeley or something else altogether
- the geographical project for the area in question, at least at some points in the Smith ancestry
(I am still trying to figure out what R1b project he belongs in)

The Smith project lists him by
- testee's surname (yyyy)
- most distant ancestor (Smith c1755, Manchester, Lancashire)
In my opinion, the testee's surname should not be shown there.

The Cholmondley project lists him by
- testee's surname (yyyy)
In my opinion, the testee's surname should not be shown there, and the most distant ancestor info should be shown since without it the info is pretty meaningless.

The geographical project lists him by
- testee's surname (yyyy)
- most distant ancestor (Smith c1755, Manchester, Lancashire)
In my opinion, the testee's surname should not be shown there.

Now for my other testee, there are similar variations. I have joined two surname projects for him as well -- they are variants of his own name that both appear in his male line, and each one has its own project. I have also joined a haplogroup project.

For variant 1, only the testee's surname (in my coded form: say, zzzz) is shown; not helpful and not proper, in my opinion.
For variant 2, only the most distant ancestor info is shown, along with a column for place of origin; proper in my opinion.
For the haplogroup, both the testee's surname (zzzz) and the most distant ancestor info are shown.

My first problem is the inconsistency. Could YDNA projects not follow a consistent format, so it is easier for users to set their account info appropriately? Someone else might be perfectly happy to have the testee's name/surname show up in matches, for instance, but not want it displayed in a YDNA project's results. I don't know why testees' names should be or need to be shown in YDNA surname project tables at all.

My second problem is the simple privacy issue. Does everyone know that if they enter their (testee's) name in their account info and then join a project, the name will be on display there? Do they know how to remedy that if they are not happy about it, other than by leaving the project? (the "Mr xxxx yyyy" option being the only one I've come up with) Do they also know the testee's name will be displayed to matches?

I wonder how many of the "private" matches we all get are because of this situation. The silly thing is that the "private" matches do all display the surname of the testee, if it appears on their account, and simply conceal the contact and other info, so the privacy intention may be defeated anyway.


Next batch of privacy concerns: what info do project administrators have access to?

I had not yet done anything to those settings in my account info, because I wasn't sure what they meant. I assumed that if I didn't check any of the boxes, project administrators did not have any access. It seems it is quite the opposite.

The geographical YDNA project administrator has queried me as to why my testee is in both the (known but possibly iffy) Smith YDNA surname project (the surname in question for the geographical YDNA project) and the (assumed) Cholmondeley YDNA surname project, and how it is that he has a match with someone with a completely different surname that entirely coincidentally rhymes with the coded surname I had assigned to him.

If I had wanted that administrator to have access to that information ... in particular to the info about the surname Cholmondeley, i.e. (a variant of) my testee's own surname, well, I guess I would not have done whatever I did, but I don't know what that is.

I have now set the account info so projects the testee is in do not show on the public view. And I have set all project administrator options to "read only".

But the question is: what can project administrators see:
- do they have access to my full account info, e.g. mailing address
- do they have access to the projects the testee is in
even though neither piece of info appears in my account's public profile?
- can they see and run reports on my testee's matches?

I would not be especially happy with any of those (particularly my contact info, of course, which I will immediately remove except for the email address, if that is the case).


Yes, I know, this is another epic tale. But I'm pretty concerned about this stuff and the various permutations of the problem are all issues for me. And I can't seem to find the answers as regards the project administrator questions, in particular. And no, I'd prefer not to ask one of them directly.

Any info, advice, thoughts?

Please do note that I am not trying to avoid contact with potential matches, or conceal useful information from them. I am allowing access to the info that is likely to be relevant (ancestral name, date and place), and providing that info for inclusion in YDNA surname project tables, and I am providing an email address for myself. And so far, I am not excluding matches at any level, although the 12-marker matches will likely be for the high jump in the case of the R1b1a2 testee as I have 3000+ matches and I assume that had I had the YDNA results earlier than last week, I would have had email notifications for all of them. ... Yes, that's done now.

[MMaddi]

But the question is: what can project administrators see:
- do they have access to my full account info, e.g. mailing address
- do they have access to the projects the testee is in
even though neither piece of info appears in my account's public profile?
- can they see and run reports on my testee's matches?

I would not be especially happy with any of those (particularly my contact info, of course, which I will immediately remove except for the email address, if that is the case).


Yes, I know, this is another epic tale. But I'm pretty concerned about this stuff and the various permutations of the problem are all issues for me. And I can't seem to find the answers as regards the project administrator questions, in particular. And no, I'd prefer not to ask one of them directly.

Any info, advice, thoughts?

Please do note that I am not trying to avoid contact with potential matches, or conceal useful information from them. I am allowing access to the info that is likely to be relevant (ancestral name, date and place), and providing that info for inclusion in YDNA surname project tables, and I am providing an email address for myself. And so far, I am not excluding matches at any level, although the 12-marker matches will likely be for the high jump in the case of the R1b1a2 testee as I have 3000+ matches and I assume that had I had the YDNA results earlier than last week, I would have had email notifications for all of them. ... Yes, that's done now.

As you and I have discussed in private messages, I and all project administrators are bound to respect the privacy of project members. This is one of the cardinal rules that FTDNA has for volunteer project administrators. An administrator could potentially be removed from his position and lose all access to private information in members' accounts if there was a serious complaint about a breach of privacy.

To answer your questions above, about the only thing I can think of off the top of my head that administrators don't have access to by default is the coding region mutations for mtDNA tests. This is because some mutations have potential medical implications. Only if the member agrees to give access to coding region mutations can an administrator view them in the member's account

Otherwise the administrator can see your contact information (name, address, phone number, e-mail address - any information you've put in your account), what other projects the members are in and the same list of matches that you see. If some of your matches are in the same project that this administrator works on, he/she can run reports comparing you and your matches.

This is not because administrators are nosy or voyeurs. They are performing a free service for you and other project members. The job of the administrator is to help project members understand their results and testing options better. They also act as a wall between you and people who see your results in the table on the public website and want to contact you. There are many times where I've forwarded an e-mail from someone in such a situation to a member, protecting their privacy and letting them decide if they want to contact the person.

As I noted, if they abuse the privacy requirement, they can be removed from their position by FTDNA. I think there should be a certain level of trust between administrators and project members. In a field such as genetic genealogy, that trust can lead to understanding and breakthroughs that project members may not achieve on their own, if the project administrator did not have the kind of access that they do.

As I think you've found out, there are two settings available for the kind of access you're able to give project administrators - "Read Only" and "Limited." If neither of these settings make you comfortable, you may have to withdraw from projects. I suggest that you not do that, but try trusting the knowledge and integrity of the administrator.

[AuntyDud]

Well, that's one issue dealt with.

I have now removed the contact information from my account info.

There was a complete address and telephone number in that info up until just this minute. It's not there now.

Had I had the slightest clue that anyone - anyone - other than the FTDNA employees who processed my order would have access to that info, it would never have been there.

I'm absolutely appalled that access was given to my personal information without notice to me, let alone my consent.

Is there somewhere on this site that informs me that project administrators will have access to that info? I know this is a question I need to direct to the company itself, along with my very serious concerns in this regard, but if you or someone knows offhand ...


"If you would like to keep your contact information private, then please adjust your Account Settings."

Not quite true, since there is no way to adjust the account settings to actually keep that information *private*, it seems.

[AuntyDud]

Regarding project administrators: MMaddi, I did disclose info like surnames to you when we communicated, because at that point we had already had some discussion and I had been reading your contributions on the board for some time, and you had specifically offered to help me privately and confidentially, and yes, I trusted you and was truly grateful for the help. (And I was right: now that I have concrete info to work with for my testees, I am starting to pick things up on a fairly sharp curve. )

I don't distrust anyone. I simply choose to control how and when and to whom I disclose personal information about myself and/or my testee. Disclosure of personal information should never be by default; the default should always be non-disclosure, to anyone not employed by the company, and the non-disclosure option should always be available no matter what the other options are.

If a project administrator didn't want someone in the project who chose not to disclose their own/testee's name/details and to give only ancestral information, then I guess that would be up to them, subject to FTDNA oversight I would expect.

Project administrators, of whom there are a lot, are not bound by any legislation or professional codes requiring them not to disclose info they have access to in the course of their duties. (I've been a member of a self-governing profession, and I know how a real duty of non-disclosure works.) I cannot imagine that there is any consequence if they violate their undertaking not to disclose, other than being removed from their position. If I am going to rely on someone's undertaking of confidentiality, I prefer there to be a more reliable guarantee.

Discussions like this:

http://forums.familytreedna.com/showthread.php?t=30695

do not enhance my confidence in project administrators (speaking generally and not about any administrator or administrators in particular) -- not my confidence in their bona fides so much as my confidence in their understanding of their responsibilities.

I note that that discussion also makes reference to concerns along the lines of what I have expressed regarding the information shown in project results tables, that you may be familiar with.

I see from this thread:

http://forums.familytreedna.com/showthread.php?t=30753

that apparently project administrators can set their results lists to show participants' names or not, and that in at least that instance there was a glitch. Again, not confidence-enhancing.

Since it is the company that has not provided me with the non-disclosure options I want, and did not give me proper notice of the disclosure that was being made w/o my consent or even knowledge, that's where I need to direct my concerns.

[PDHOTLEN]

Well, I just don't care about privacy issues. I am a dead end, both on my maternal side and my paternal side. And nobody who is remotely related to me has ever wanted anything to do with me. So I just don't care whether I infringe on our mutually related DNA privacy or not. If any remotely related relative would have contacted me and expressed some kind of concern, I would have listened to them. End of story.

[AJRL]

Hate to troll, but we (as a community) should probably come up with a better term than testee.*

*I provided this link for those with a native language other than English or for anyone who didn't pass 7th grade health class.

[Stevo]

Hate to troll, but we (as a community) should probably come up with a better term than testee.*

*I provided this link for those with a native language other than English or for anyone who didn't pass 7th grade health class.

I agree. The plural of that is especially humorous, at least phonetically.

[Zaru]

I'll address this personally.

Regarding project administrators: MMaddi, I did disclose info like surnames to you when we communicated, because at that point we had already had some discussion and I had been reading your contributions on the board for some time, and you had specifically offered to help me privately and confidentially, and yes, I trusted you and was truly grateful for the help. (And I was right: now that I have concrete info to work with for my testees, I am starting to pick things up on a fairly sharp curve. )

I don't distrust anyone. I simply choose to control how and when and to whom I disclose personal information about myself and/or my testee. Disclosure of personal information should never be by default; the default should always be non-disclosure, to anyone not employed by the company, and the non-disclosure option should always be available no matter what the other options are.

If a project administrator didn't want someone in the project who chose not to disclose their own/testee's name/details and to give only ancestral information, then I guess that would be up to them, subject to FTDNA oversight I would expect.

Project administrators, of whom there are a lot, are not bound by any legislation or professional codes requiring them not to disclose info they have access to in the course of their duties. (I've been a member of a self-governing profession, and I know how a real duty of non-disclosure works.) I cannot imagine that there is any consequence if they violate their undertaking not to disclose, other than being removed from their position. If I am going to rely on someone's undertaking of confidentiality, I prefer there to be a more reliable guarantee.

Discussions like this:

http://forums.familytreedna.com/showthread.php?t=30695

do not enhance my confidence in project administrators (speaking generally and not about any administrator or administrators in particular) -- not my confidence in their bona fides so much as my confidence in their understanding of their responsibilities.

I note that that discussion also makes reference to concerns along the lines of what I have expressed regarding the information shown in project results tables, that you may be familiar with.

I see from this thread:

http://forums.familytreedna.com/showthread.php?t=30753

that apparently project administrators can set their results lists to show participants' names or not, and that in at least that instance there was a glitch. Again, not confidence-enhancing.

Since it is the company that has not provided me with the non-disclosure options I want, and did not give me proper notice of the disclosure that was being made w/o my consent or even knowledge, that's where I need to direct my concerns.

I think that you are viewing the glass as half empty. It appears that you did not see that I took a proactive approach in addressing the issues of privacy control. I have never, nor will I ever, reveal the identity of a participant. I merely sought out information from other PAs regarding this issue. Many of my participants desire to have full access to others information, but I cannot divulge that. As Elise pointed out, she acts as the buffer- which is the best approach.

I personally and professionally understand liability issues as well as ethical ones. Since you did reference two of my threads I feel that I should highlight the proactive approach that was made on behalf of the members, it was not an issue of acumen, but concern for the participants.

Mike and Rich are incredible PAs with whom I have worked with and I would take into serious consideration whatever advice that they freely give to you.

[AuntyDud]

To try to avoid misunderstanding, I was referring simply to the fact that the discussion took place -- and given the large number of volunteer administrators here, who knows whether all of them are completely familiar with their duty of non-disclosure and what it means?

In any event, the thing is that there is no liability on the part of project administrators; it appears that the only sanction is removal from their position. I wonder what liability the company might consider it has for actions of its volunteer administrators ...

I know not everyone shares my concerns about privacy; it doesn't matter. It is a genuine and valid concern in our world, for as many reasons as there are people, and that's why we have laws that govern the retention and disclosure of personal information by public and private entities, for instance.

I wasn't looking for advice (other than on how to protect personal info from disclosure); I was looking for information. I've been in personal communication with most of the administrators for the projects my testees are now in and have no problems with them, and have found them helpful. (I had already been in contact with one for some years, from a time when Terry Barton asked me to take on a particular surname project, which I didn't do largely because it seems to be a fake surname in my testee's line, and the current administrator eventually did, and I had been in contact with two others from before ordering test kits.)

The problem I have is with the company disclosing my / my testee's personal information to the project administrators. I'll be pursuing that question directly with the company, now that I know that the disclosure was taking place w/o my knowledge or consent and that there is no way for me to prevent that other than by deleting the information from my account records.

I am and expect to be even more grateful for the help project administrators and others have given me. That is a completely separate issue from the disclosure of personal information to them.

[travers]

Good to know you made changes to your account that makes you comfortable, and good to know your issues are now resolved.

[AuntyDud]

Obviously the issues are far from resolved, and I am not comfortable at all with the access allowed to my account info; but thanks for your interest!

[thormalen]

Paranoia Rules:
My take on all this is that paranoia is running rampant...and some folks seem to think the whole world revolves around them. In this case these people want all the information possible with out giving any out. Why should I give ANY information out to someone that is, for what ever excuse, not giving me information back.....and the answer of course is that I believe you should not even get a look at my info if you do not want yours open to me.

[sspeters41]

Thanks thormalen, I could not have expressed how I feel any better. You summed it up perfectly. There are a bunch out there who see a conspiracy behind every tree. The sky is falling!!!!!!!

[thormalen]

Thanks Peters.... Genealogical DNA research is all about sharing information. If someone does not want to share their info and data that is fine with me but stay away from me and mine..... Better yet they should keep their money in their pocket and not test in the 1st place. One person's DNA information is worthless without the accumulation of all that has been learned before from other human testing and then the sharing that information.....

[AuntyDud]

Paranoia Rules:
My take on all this is that paranoia is running rampant...and some folks seem to think the whole world revolves around them. In this case these people want all the information possible with out giving any out. Why should I give ANY information out to someone that is, for what ever excuse, not giving me information back.....and the answer of course is that I believe you should not even get a look at my info if you do not want yours open to me.

I suggest that you learn how to read.

What I do not want disclosed without my consent is:

- my name, my telephone number, my address -- all of which were in my account details and made available to project administrators without my knowledge

- the other projects to which my testees may belong -- the very fact of that membership being something that may disclose sensitive personal information

What business would any of those be of yours? How would you get access to them anyway, if you were not an administrator of a project to which I have signed up my testee?

Read the part where I said that I do provide:

- a contact email address
- the surname and approximate DOB and place of birth for the most distant known ancestor

that are available to anyone with whom my testees match at FTDNA or Ysearch.

What is your problem?

Damned if I know. Or care.

I do not disclose identifying personal information on the internet, or to anyone at all by default. I choose whether, and how and when and to whom, to disclose identifying personal information privately. Which is pretty much what any reasonably intelligent and careful person does in this world.

I'm sure you are all aware that these discussions, for instance, can be read by anyone with an internet connection. Disclosing identifying information here would not just be a breach of my DUTY of confidentiality to the person who offered up his DNA, it would also be utterly moronic, given the level of blind hostility my comments have generated already. I have been a victim of on-line stalking by a loon who disagreed with my political opinions and followed me around vilifying me and making veiled threats, and I don't intend to have anything like that happen again.

You do what you like, and I'll do what I like, and we'll all be happy. I simply want the option of doing what I like, and not what somebody else (in particular a company in possession of my personal information for the purpose for which I provided it and no other purpose) decides, without asking or telling me, that I will do.

I will be more than happy to stay away from you and yours, and from anyone else who wants to jump on your hobbyhorse with you. If you don't want to address something I have actually said and prefer to make things up and pretend I said them, perhaps you would stay away from me.