Impact of DNA testing and GDPR

+2 votes
267 views
Another interesting note that may require closer scrutiny is the MTDNA line.

I have heard, that a full MTDNA sequence can actually contain health information that people with specific diseases would probably not want out in the open.

It is my understanding that if an MTDNA relative of someone with such a DNA makeup posts their full sequence information, it will directly impact many people who may not want this information disclosed, signed waiver or not.

The question I have is, do any of our DNA team have the skills to identify these sequences and craft a warning or safety for this kind of impact?
in WikiTree Help by Lance Martin G2G6 Pilot (101k points)
With this logic, you can pretty much not publicly share any DNA information. Because it might reveal something some relative might not want revealed.

However, this is my DNA information to share. If you share DNA with me then you have the option of remaining anonymous on online trees.

Of course, it’s possible to uncover people using an ancestor and public records, such as obituaries, but that Europe’s problem. They can ban obituaries and the release of all recent public records in Europe but they can’t enforce that in the US.
Well I agree sharing actual DNA data is questionable especially segment matches. However AU dna changes much morte quickly than Y or MTDNA. Just because I have an autosomal genetic disease does not mean my cousins or other member of my family will. However with mitochondrial genetic disease it is more likely they ill be passed to many of my many mtdna relatives.

2 Answers

+11 votes
Actual DNA sequences are not posted to Wikitree, so this particular concern would not apply here.
by Kerry Larson G2G6 Pilot (160k points)
So there is no known MtDNA haplogroups that have a significantly higher rate of genetic disease than others?  

If so, it is a concern since it changes so slowly.
Actually a quick search reveals:

 

https://www.ncbi.nlm.nih.gov/pubmed/28832883
My answer only applied to the statement about analyzing DNA sequences.  You are correct that certain MtDNA haplogroups have higher associations with some diseases.  I don't know if that particular issue has been addressed on Wikitree.
Yes. A full sequence dna can narrow your mtdna haplogroup significantly.  Mine is something like k2b1a1a.   I know there are many mitochondrial diseases.  By sharing my group I am sharing information on a significant number of other mtdna relatives.

 

Anyway.  Just a thought.
That article basically says that autism is associated mainly with European mtDNA haplogroups. Who needs DNA tests? If someone were really evil, they could use that study or others of its kind to draw evil associations. The study does not show causation, just correlation. The cause could be diet, stress, or environmental poisons more associated with that population, not a genetic causation. But if there are evil governmental intentions, a la Nazi Germany, they just need an excuse, not proof. I don't think we should let that fear rule us, because there is no way to hunker down enough to control such things.
I do not disagree with you. My point was here are actually ways of sharing dna data on wikitree that indeed might be problematic. Haplogroups are a way of sharing specific identifiable genetic mutations. The more specific the haplogroup the more genetic information shared. With the mtdna data, they change very slowly so it is highly likely a mutation you have is shared with many generations of mtdna relatives. I also know that mtdna testers are warned that they may be revealing specific KNOWN disorders by sharing their data. My question is, are those disorders possibly part of haplogroup coding?  By revealing an mtdna haplogroup I am revealing the EXACT information for many relatives.

This is actually a possible concern. Just revealing I took a dna test at ancestry reveals absolutely nothing except that people can look at ancestry., see if I am sharing my test and if I am a relative. Ancestry is making sure any genetic information is hidden there. They are the ones that control the specific personal information and have the systems in place and  necessary protections for me to share it.
+4 votes
I have read some of this privacy. I cannot believe we are going to go backwards and be hand-cuffed and muffled.i wish to know why after all this time no-one has complained about what we do, should they whinge now?  Is it because the law might catch up with a rapist?  I am going to rant, because which court will the trials be held - Nuremberg?  Is this the beginning of the One World Order? Is the IMF behind this and wants to get a foot into our world and wants us to pay?  If we have so many millions of Wikitreers and we get along, we don't always agree but we treat each other with respect, we think about what we put in our biographies.  We even put clues and hints in our research notes for future generations to work on.  DNA is another tool.  We help each other.

Maybe we should sign a Proclamation saying ( starting to sound like Arlo Guthrie here) we will continue in our ethical way as we see honourable and will not be subject to the rules of a totalitarian group which may not be around in 20 years. Our tree  encompasses not only lineage but DNA, photos, certificates and links too.  It unites people,it does not pull us apart., It trades in information, thank yous and caring.

Thank you Rant over. ( I hope I don't regret this but it gets on my gaul  being dictated to when I don't think we have or are doing anything wrong).
by Rionne Brooks G2G6 Mach 6 (60.1k points)
I think there is a balance between protecting privacy and using dna as a tool. I lunderstand the danger of  losing privacy of dna data. There are real concerns. Our handling of it here though shows our ignorance of the situation.
You make some good points, Rionne, but apparently listen to too much Art Bell and Alex Jones with the NWO and IMF stuff.

 

The real concern should be autosomal DNA as put up on GEDMATCH.

Catching a murderer or rapist, fine, good work. But the real danger is the use of DNA by insurance companies to rate or deny insurance.

GINA, a law,prohibits health insurance, not life insurance, from using DNA for that purpose. But laws, as we well know, are negated by courts and reversed by subsequent legislation, and given the fact that we have the best government money can buy (the number of lobbyists on K street) outnumber our congressmen and senators and they pour millions into campaign coffers, then we have a concern.

So is catching a murder or rapist here and there more important than the fact that millions of people can have their insurance premiums raised,or a policy denied?

Maybe you can afford it, or it is of no concern to you,but what about the millions of people adversely affected by the use of DNA to rate or deny an insurance policy?

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