Having done some testing over a period of years i can tell you that sharing the DNA test results is needed. Not the persons personal information. Liken your DNA test results to a article describing your clothing, that’s all you are sharing. The more that is out there the more power the researchers have to get better & better results.
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I am interested in having this done but do they only share your dna or your personal details as well, do you know
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Hi @jewls.666, you can normally find this info in the ‘privacy policy’ found on websites. Here’s one from ancestry.com.au, which basically states that your personal data can be used within Ancestry Group Companies for cross promotion. Your data may also be shared with potential relatives, and third parties may be able to access your personal data to perform services but not for other purposes.
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Here’s a podcast and editorial about genetic testing (for medical reasons) from Public Health expert Ken Harvey
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I have a rellie who uses ancestry.com. Their systems are automated with a goal of helping you research your ancestors, and it is a pretty good tool, but the “hints” they email could indeed lead to some privacy issues in my opinion. That being written, the same information is all over the place on the internet. A search for myself in the US shows most of my prior address, relatives and ages, sometimes professions,… it has gotten to the point that worrying about privacy is almost just another thing to worry about that no one is going to be able to “put back in the box”. 
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I used Family Tree DNA. Here’s their privacy policy: https://www.familytreedna.com/privacy-policy.aspx
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HI I recently attended a workshop on current DNA research by the Queensland Institute for Medical Research. They mentioned this issue of commercial DNA testing and expressed some strong concerns about eh testing and the hidden in the small print proviso that they could share/sell your information to a range of other companies without your permission or knowledge. Very disturbing idea.
Dr Sarah Medway at QIMR was quite eloquent in expressing her concerns as a researcher in the field about what was being tested for, the lack of safeguards and regulation and lack of counselling or informed explanations of how to interpret the test results. Their recommendation - don’t do it unless the institution is a reputable research and/or medical institute and you have a need rather than a curiosity to know.
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A related BBC article: http://www.bbc.com/news/business-40045942
The Wikipedia page about ancestry.com is also informative. The Latter Day Saints (the Mormons) were the source of the original data behind the origins of ancestry.com, and they are very interested in families and connections between families.
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Thanks everyone for your responses, keep them coming. It’s a very interesting but vexed topic. There may collective benefits in DNA databases and sharing but the imagination doesn’t have to be stretched too far to see issues with it. Possibly also an area that legislation is struggling to keep up with? I definitely think it needs to be very clear what consumers are signing up for.
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An interesting article about DNA tests.
I suspect there will be a great many people with criminal histories desperately hoping that none of their relatives will get DNA tests done.
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It’s potentially a double edged sword.
The exposure of yourself or related person to the law is a bit like Yin &Yang.
Having road tested Ancestry’s testing service to add to the wise ones family history research has had positive outcomes. Mostly for others. We still value it has connected two other families, whose parental connections had been broken through circumstance. These were close connections you might value, as we come from small families.
There is a risk that your family history also exposes you to unwelcome attention, identity theft or worse. For most of us that risk may be acceptable, providing you act with caution.
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Another article on DNA testing implications.
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Two more articles regarding DNA testing.
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The horse in respect of the content of the family history data bases and DNA has long bolted. From our experiences with Ancestry and other tools:
Prior to DNA being promoted many might be surprised to find their family connections including personalised data is already in one of these data bases. Evident in Ancestry are a select group of avid collectors who seek out names and create links berween those who are extremely distant living relatives or just other families and individuals their interest turns up.
Most of us are now mapped in some way. Most of us with European connections probably have distant relatives now through past immigration living in the USA with a DNA profile potentially identifiable through results from the USA alone.
That I and other Aussies or Brits etc have made this a simpler task is just icing on the cake to those who have higher levels of access to these and government data sets.
The real need now is to ensure the security of the core data in all areas, assure privacy and importantly require strict legal recourse to use the data. Others have said so in the prior linked articles.
Of course the majority may let this pass?
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A recent change within Ancestry for users is an improved matching of individuals listed in the online trees to the Australian Electoral rolls. This may be an unwelcome revelation to some of us?
Ancestry had located in relatively recent rolls (1970s) both my parents, complete with hints to link the roll entries to their profiles. Both are no longer living. Ok, is that an issue?
For me it is an issue. The rolll lists all family members at that address and of voting age at that time. While my ID is concealed by ancestry as I am still living and for good reason, the roll clearly reveals my ID as well as several of my siblings. It could only be worse if one of us was still living at the same address.
While I have a choice to not accept the hint and complete the link, the same hint will appear in any other tree created that includes either of my parents. I know of at least 5 other public trees that list my father, and a similar number for my mother. Not all of these trees are from closely related families.
Is this due to DNA matching? Actually no in myninstance! Several of the larger trees predated the DNA service! It is more a consequence of paper records being digitised in searchable formats and businesses such as Ancestry gaining access to the data sets. Previously you could access the same data, but only by manually reading a microfilm copy in a major library. Not so convenient, and then you definitely needed to also know which roll to ask for.
It is not so much an issue that name and address data is available, as there are numerous ways to search for this info. Any alarm is from the details being linked to a broader set of family relationships that are readily searchable. Identity protection using traditional methods of personal verification will need to change.
DNA in my instance is not typically linking near relatives. It is pointing to more distant family connections 3 or more generations past. All to do with 19th or 18th century families. Data which is of little use in a modern context.
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Now Ancestry are offering as part of that DNA data Health reports to you. The following is a copy of the message in an email I received:
" To Our Valued Members,
At Ancestry, we wake up every morning with a single purpose: to enrich lives by empowering journeys of personal discovery. For more than 30 years, we’ve helped people learn more about themselves by connecting them to their past so they can gain meaningful insights to shape their future.
This would not be possible without our passionate and loyal members. I want to thank you for everything you do to make Ancestry the thriving and vibrant community it has become.
In our earliest days, these journeys were exclusively about genealogy—building your family tree, understanding the stories and experiences of generations before you, and connecting with extended family through shared experiences.
Seven years ago, we launched AncestryDNA® to help millions more people accelerate their personal and family journeys of discovery and to make more connections than ever before. And we continue to innovate and invest, providing more and richer sources of content like yearbooks and obituaries, improving our discovery tools such as ThruLines™, and deepening our DNA solutions with more granular insights on ethnicity, communities, and inherited traits.
As DNA science has continued to rapidly advance, we know that we have barely scratched the surface of what’s possible in empowering our customers to learn from their family heritage and their DNA. Over the years, we’ve heard from many of you that you are interested in solutions to understand the connections between your DNA and your health.
As a company, we’ve seen adding this capability as a natural evolution, but only if we could do it in a way that was authentic to our core mission. That would mean creating a solution that could enable our customers to gain meaningful insights to help them live longer, healthier lives.
Today, we’re excited to announce that AncestryHealth ® will soon be available to you.
Our goal is to help you and your family understand your risks so that you are empowered with the information and connections you need to make better, more informed decisions about your health. As with all of our Ancestry services we have created, our solutions are based on always giving you control over your data and the choice of which journeys you want to embark upon.
On behalf of our team, thank you for being a part of our Ancestry story. We look forward to taking the next step on the journey into health and wellness with you."
Just wait until actuaries, insurers, Govts, Law Enforcement etc demand access to your DNA Ancestry results as a standard procedure. Imagine the money Ancestry will be able to make from having all that data about health etc and their ability to sell that. Just having yourself linked to a close sibling may be enough to cause you financial or other impacts currently not envisaged by many. There are sure to be both good and bad outcomes but the rules, policies, and data protections around this are so far not keeping up with the tech advances and the drive for profits has had powerful impacts on getting decent protections in place. Not only may it be buyer beware but it may have many other unintended ramifications of those who did not “buy” but are linked none the less by something they have no control over.
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I’m surprised I had not posted in this thread before.
I took an Ancestry DNA test some 4 years ago… reason being, I had been adopted and had been unable to find any information about my mother, and less of my father who was not mentioned on the birth certificate. So having hit many brick walls, I decided to fork out for the DNA test and found all the information I could have wanted and possibly more than I needed.
I now have two half brothers - one doesn’t want to know me, but thats fair enough, going through life without a sister and then having someone rock up and say “here I am” is a bit disconcerting. Not that I rocked up anywhere, I’m not like that. Anyway, that was all on my father’s side. And they all knew I existed… apparently I was a family legend! I have regular contact with one brother and a cousin… I like them…
As for my mother… well, no close DNA matches on that side, but I was still able to use the Ancestry system to find information about her and her ancestors, which has been enlightening, though not surprising, except for in her father’s line (my grandfather, a scotsman, descended from the kings of scotland. Hilarious)
I guess what I want to say is this: yes, ones info is now out there… but not one’s address and not personal information for anyone who wants to see it. The family trees give NO information about people still living to others not invited to your tree. I went in with eyes wide open, but my need to find my birth parents was greater than any anxieties I may have had about what would happen to my DNA data. And the results, for me, were positive. I’m just disappointed that I did not have the opportunity to meet either my mother or father… just bad luck. Both passed away long before i started looking.
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I found the Ancestry DNA results illuminating and added useful data to family trees drawn from historical records which are not always accurate or complete, and were sometimes actively corrupted to suit the purposes of some folk of the day.
I reckon most families have some dark secrets that have been covered up by the black sheep who perpetrated them or others who were ashamed of them. It is interesting that these secrets that were once so agonising are now fascinating. Probably something to do with many being to do with sex.
So electronically stored DNA data has this much in common with paper-stored human observed data: they are both valuable if made accurately and kept and used in good faith and both dangerous if not. Or as I told my clients when I was in the business; we have to be careful when we computerise your system not because computers are so bad, similar errors will still occur and for similar reasons but once automated they will happen 1000 times faster.
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