From gedmatch to ftDNA privacy – I will need a bodyguard after I write this for several reasons, …in no particular order,
BUT do NOT – NOT mis-understand – I am still gedmatch’s biggest fan – but we must lay it on the table.
This is not just GDPR but also all 50 states in the USA have passed data privacy guidelines, statutes and laws. DNA for genealogy is seeing a double dose of, what do I do, not only because of privacy regulations but also with the newly added feature for the possibility of matching serial killers.
New DNA for genealogy matching feature?
Folks chuckle and say, ‘well if you have nothing to hide, then why not?’
Bull hockey! 2nd cousin’s worth of criminally insane genes? – you go chase yourself. There could be divorces, counselling for children.
There will be – IS/ARE? insurance rates going through the roof for pre-existing conditions – directly? due to research through our DNA in some of these companies? And now with added confirmation of demented relatives.
I am also betting Gedmatch will have a flood of new people just because of the publicity – there will be tones of folks who want to know if they share even 3.5 cMs with any of these people. For those of us that don’t care where our genes are, and always wish for new matches, then this is just a bonus of happiness for us – new and more people, even if many say no and wish to leave.
There was confusion in statements and writings about whether gedmatch was/is ‘open source’ or not and – I note here I am working on this answer. But I can’t wait to hear the defense attorneys on this and the supreme court. And the new disclosure might have taken it to being ‘open source’ and it was not before? I just think the question should and I bet will be answered.
The minute I heard about the possibility of new work in DNA for (criminal) genealogy I messaged a ‘leader’ of research, who I truly admire and root for, and said straight up – I can use work and offered my services. But I also will rail against the ethics of this and warn this has to be a defense attorney’s dream. But DNA for genealogy is a thankless and often payless job. I am really really good at it and have done it for a long time – longer than most of the known leaders in the industry. I can be contacted through this page.
For more than a decade, I have told folks who considered testing – ‘if you have left a child somewhere, there is a good possibility you can find them so if you do not want new people in your life this is not the hobby for you.
and I add – if you are wanted for an indictable crime do not test. I was laughed at.
No one is laughing now and I am delighted to say – I told you so. Am I deleting my data uploads? – NO.
But also the plaintiff’s attorneys need to get on this – the medical is far too general and there needs to be class-actions filed that there are too many variables in the genes to make true judgments about hereditary medicine as a general rule and the insurance rates geared to possible genetic predispositions is unfair.
In every family you test two siblings and their admixture – their numbers of shared chromosomes with shared relatives – and everyone of their dag gummed genes are so variable that they might not even look alike in admixture much less hair and eye color. It is insanity, and arrogance, and a fraud, that any scientist can claim they will know the medical disposition of anyone from a bloody autosomal test at the piss-ant tiny level of the iota of genes they test –
They even get stuff wrong.
There has already been at least one mis-identification in the DNA for crime solving, – I need to read more and get back to this answer as well – but I think it went – some bimbo tried to use y-DNA for an ID – and I am not certain of the haplogroup but if they were an R1b they will have more exact male relatives in this and any country than you can shake a stick at. Some one will have the poop sued out of them over that one also.
And what happened to how you obtain evidence in this country? If I got work, and I want work – I would want the law enforcement agency to give me a get out of jail free card because someone will prove this is against some thing for evidence and it might be the lowly researcher who is thrown under the bus. And I would especially want a signed deal from the folks that they would pay for any civil lawsuit, legal fees and settlement and costs to me in perpetuity that comes up in this life or the next – because I can’t afford it. It might be one thing for civil liberties to be ignored and no one will complain when the criminal is an odious raping murdering lunatic but what about when it is over a parking infraction – and we are there, it is only a matter of flipping the switch.
So much for gedmatch – I suppose they will be upset with me but I hope not.
I must remind my folks what I told them in the beginning – if you are wanted for an indictable crime do not test – AND now I have to add – if you do not want to be related to, or associated with Jack The Ripper – Do Not Swab and keep it zippered. (I am so sorry – )
But we also must remember this DNA for genealogy is a hobby and what is the risk really – outside of the medical – our samples are out there in the cyber sphere anyway. Labcorp, Quest, etc., – we are likely done and dusted already.
ALABAMA was the last of the 50 states to adopt data privacy rules – it is not just GDPR – We have a responsibility to our families and friends and as project administrators we have an obligation to at least be honest and upfront to the folks we help. This is just one story about the last state to accept guidelines.
GDPR gave us all a deadline – but have we failed to notice the handwriting on the walls of many countries long before now. The intensity of the coverage might be partly over violations by the biggies like Facebook etc. in the cyber sphere but these laws are everywhere and personal. If someone entrusts their DNA data with us and we use it for something else we would be in violation – It is not just website safety – there is also fine print.
The medical piece is bothersome – those several main companies who are sharing data for medical research – read for yourself the fine print – do not talk about their own glitches and mistakes.
Let’s say one of those share/sell DNA for medical companies is not even acknowledging or answering when questioned about results – does that alter the medical research?
Let’s say mt-DNA haplogroup H1 is comprised of specific SNPs and markers and so on and those SNPs in combination with others are the basis of contributing to health and wellness or not.
Let’s say mt-DNA haplogroup H3 is comprised of specific SNPs and markers and so on and those SNPs in combination with others are the basis of contributing to health and wellness or not.
Let’s say four of the main companies say a person’s mtDNA haplogroup is H3k1a – with two companies saying H3k1.
Let’s say another company that shares/sells DNA data for medical says this same person is H1 – then what?
Ok, H3 is ‘downstream’ from H1 but what if between the two, this alters any medical findings? Not in years and years has there been a satisfactory answer. Of the two in writing times to question I was told they had their own method of reading and stand by their findings even when i gave them the results. But in reading the different companies methods, I see two of the companies use the same method, so that is no excuse either.
If these are the hands our medical futures are in we are in trouble.
ftDNA’s new privacy changes were on-time and great for the consumer. I wrote a how-to for my folks and several have sorted their settings as they would like – for those that know who I am they all thought the instructions easy and sorted out their settings.
Since then a few glitches have come to light – one which still has no answer.
There is the anomaly of PUBLIC setting for trees – I got an answer from ftDNA more or less that this is meaningless and anyone living in the last 100 years is private anyway and that makes no sense – do they need birth dates? to have that feature triggered – and what happens to most who have no birth dates – are they public or private? I want folks to see my tree, but half do not have birth dates; does that mean my matches cannot see them? I think more than anything the term ‘public’ is confusing, but it opened another question for me.
I asked another person the same – and they said they had not heard this or had it to come up.
No project administrator has been willing to give up one iota of information for research – but in project administration we should first be helping our members and not extorting their data under duress.
Finally ftDNA has made the settings so we do not have to be inundated with too many emails – as a consumer do not want to see every 12-marker match of any of my R1b – YES – of course I go and check for them on a regular basis – many people only test 12 and so we might see someone in the 12 marker group who might be the bingo and we can see about them adding markers. But to get emails every week for the 12 and 25 marker levels, I am tired of it. For my G2a I want any match 12 marker even 10 of 12 markers.
These are the notes I wrote to help members with privacy initially.
Also for autosomal DNA – many people wish their settings to be strict – only to be notified of immediate matches and this causes consternation for some project administrators who want to see all – maybe they are sorting out distant matches to understand close ones to nab serial killers. What difference is it to the project admin unless the member asks for help?
But it is wrong of project admins to be angry at companies and project members because they do not see what and all they wish.
My project members – are welcome to – and I have encouraged some to change their settings so they only see 37 marker matches and larger, and close and immediate matches so that they will participate again at all, they don’t want too many emails.
Before the new ability to filter notifications, one family turned off all notifications because there were too many emails, so it is wonderful that our people can now have their settings as they wish and we need to respect their wishes and support our members and help them have their settings like they want them – not like we want them for research. And we should not be considering throwing people out of projects because they don’t want their selves on public display or being emailed about it several times a week.
According to my father, it happens to be his birthday today, I have a sister out there somewhere. I was told by him someone got in touch and my step mother objected to contact. This was about 45 years ago. He told my late little sister also and she also encouraged me to find her. So my DNA is everywhere. Nothing so far, but if she ever tests and IF she is really Sam’s daughter, when she tests she will see her results with ‘immediate family match’ waiting – she will have a half sister and an aunt and cousins.
We should not be angry at those who want to quit one database or another or have strict settings in another and others, we should help them learn to turn off what they wish to turn off and turn on what they like when they wish.
We all know people interested in DNA for genealogy quite likely will be back and I must believe this has added a lot more people than it has taken away.
The issue that bothers me the most is the medical research and medical insurance and there is no solution for that I bet, that is a runaway train and will be left to the lawyers to sort out just like the civil and/or criminal cases I warned about a decade ago and was laughed at.
I told you so.
But like the database to compare yourself to ancient skeletons, in not only gedmatch but also Jean Manco’s Old site preserved here…
– I bet the next step will be a database to compare yourself to serial killers. There is already a bit – like Jesse James and…
…Like are your parents related? – …guessed eye color? – We can never replace Gedmatch – I love it so.
If you have deleted your Gedmatch account in a rush of judgement – consider all the research. I for one, hope we all stay – we are stronger as a whole – more than the sum of our parts. A loud voice of genes. So keep them in mind to use as a genealogy tool.
For all the gedmatch lovers this is another blogger who has a great site with a one-page explanation glossary for the admixtures – all of them. The admixture calculators are another can’t miss feature and this page reminds us why.
The most important thing is to not delete yourself your testing kit altogether, and if you consider this – at least save a back up. If you want to take a step you could begin by just turning it off for a while before you delete – it will be expensive to pay to test again and most will want to test again – I bet. Keep in mind many of our most loved companies do not take other party uploads so deleting will certainly result in needing to pay again if you change your mind with some.
I am not in competition with any of the great bloggers that I know of and love their work, as I have said I am communicating and sharing all my work (nothing about living except my self and my Dai and nameless examples, unless they give specific permission) freely and answering questions that come to me from my project members, clients, family and friends and anyone who wishes to read and follow my blog.
I felt there needed to be some more basics for DNA for genealogy and I offer those hints and helps in the simplest and plainest terms. As genes grow old and memory fades, maybe I will have to read my own blog to remember how and where to find myself.
Lots of fun sites – once you know your haplogroup(s) – you can compare those to others as well.
As I mentioned – the day I am writing this is my father’s birthday, July 2nd. As he would say, someone had told him this was the true day for the signing of the American Declaration of Independence. He might have wondered at times if I was his, but he and I agreed on my identity otherwise. BTW he is y-dna haplogroup an I2b group – I-Y5673. (For that matter mother’s father’s y-dna was an R1a R-CTS4179)
When I tested my DNA I did not wish to be a Native or Viking princess, I knew who I was and no test could shake my own image – don’t let DNA change yours – not by relatives or haplogroups or medical – this is still a science in its infancy.
For those who have followed the sisters of the dance troupe – here they are practicing the above performance.
Our very own DNA for genealogy project
DNA and crime:
2018 Golden State Killer