Keeping data private ???

[satyricon]

Somewhere on here I saw a thread about whether to keep some data private because of medical info concerns.

I can't find the thread.

Can someone clue me in - is this and issue with FGS results ??? the specific markers, or the Haplogroup in general (aren't they the same thing in effect) ???

is there something that I should not be putting in my signature ???

[russellhathway]

Hi there. The issue is with the FGS. In the FGS, the mitochondrion is fully sequenced, and you get HVR1, HVR2 and the Coding Region (CR). You should omit the CR from signatures, in the unlikely event that someone accesses this forum.

Anything in this forum must be considered the 'public domain'. I think it's fine to display HVR1 & HVR2.

The health issues are essentially a bunch of rare metabolic disorders - mitochondrial diseases. Apparently, you can (for a small fee) get this analysed by Dr Ann turner expert in this area and author on genetic genealogy book to boot.

From what i can recall, the CR is kept private from project admins (perhaps someone can confirm this), so no need to keep your results private, otherwise no-one can find you!

There are no health issues associated with the Y chromosomal test.

Hope that helps!

[rucksack]

A small correction to the above.

FGS results may be made available to project admins, and if someone wishes to be in a project that is specifically targeted to individuals because they have the FGS, those results must be made available to the project admin, otherwise they can't be in the project, but that is for FGS projects only.

I allow all of my results, including the FGS CR, freely available to all of the admins for the many projects that I am in. This is an individual decision, and the Ann Turner report is certainly recommended. Your preferences page has boxes to check off to show which results you are wanting to share with project admins.

Sharing FGS CR results with a project admin does not make your result available to other people in your project, and are not displayed in the group spreadsheet.

[russellhathway]

I stand corrected!

I didn't know that! ...you learn something new every day!

[satyricon]

does that mean I also shouldn't give out the maternal haplogroup ???

does that convey the same info ????

or are the multiple coding region results, that can give the same Haplogroup ?????

[vinnie]

Since no medical information can be determined from Haplogroup designation or HVR1 or HVR2 values, it's safe to post that info if you want to; it's only the coding region mutations that might have medical implications.

[satyricon]

I guess what I am missing, and not saying clearly, is whether the Haplogroup is sufficient to know someone's CR ?

or said another way - can many people have different CRs and end up with the same Haplogroup ???

????

[rucksack]

No worries whatsoever with Haplogroup assignments or showing HVR1 and HVR2 data.

Even if you have one of these rare mutation, it might not even have a negative impact medically.

Just because someone has a mutation that might be considered "bad", just doesn't make it bad all of the time, and quite often it rarely makes it "bad".

[gtc]

From what i can recall, the CR is kept private from project admins (perhaps someone can confirm this), so no need to keep your results private, otherwise no-one can find you!

The default privacy setting for that data is to disallow admin access, and unless you change it that's how it remains.

Another related issue was that FTDNA provided a FASTA file generator utility which apparently had a privacy loophole in it that inadvertently allowed admins to access your mtDNA data regardless of your privacy setting. As I understand it, FTDNA has withdrawn that utility pending a fix to that privacy loophole.

[PDHOTLEN]

Re Privacy

I've been quite reckless, as far as privacy goes. But the (scientific) rewards trump that issue. The only living person I know, or at least have contact with, who has my haplotype is my sister, and she hasn't objected. But then, she has a married last name, so her maiden name wouldn't point to her. There are theoretically many female descendants of my earliest known female ancestor out there somewhere, but, for the most part, they haven't revealed themselves online.