In the last few years there has been an explosion of DNA testing for genealogical purposes and if you are a family history researcher like me, then you will have either already taken a DNA test yourself or at least considered the possibility of taking one. But are you fully aware of the potential risks associated by what you potentially uncover, because once you’ve opened Pandora’s box there is no going back!
The price of these kits has dropped dramatically in recent years, which has made these test kits much more affordable, but have you stopped and thought about what the potential impact of taking a DNA could have within your own family? With well over 20 million test kits sold, Ancestry leads the way with numbers and once again in the lead up to Christmas a DNA test will be a popular gift for many, but do you risk tearing your own family apart by what you discover and should these kits come with a warning?
In line with the explosion of DNA kit sales, there has also been a rapid increase in DNA based TV programmes, both in this country and around the world and the emotional impact of these programmes is immense. You can’t help but be moved by the emotions of families being reunited after decades apart, thanks to the powers of DNA. The programmes are designed to pull on your heart strings because that makes for great TV. Of course, what doesn’t make for great TV is the heartbreak and devastation that these potential DNA discoveries cause. So, is there a darker side to DNA testing that we should be more cautious of? I would imagine that for every incredible family journey that there is also a devastating story of despair and heartbreak, but that doesn’t make for a good TV programme does it.
Ethics within the genealogy community really is an important and big issue and something that I have spoken out about many times, but is there a moral responsibility on DNA testing companies to issue a more prominent warning to potential customers of the potential impact and consequence of taking a DNA test or should that burden of responsibility rest solely on the consumer, you and me?
The biggest concern raised in recent years has been the privacy issues surrounding certain websites and whether your data has been compromised and quite rightly so, this is an important issue and should be highlighted and addressed. But raising concerns about the darker side of DNA testing and the risks associated with taking a DNA test appears to be a lone voice and maybe something that the DNA testing companies would rather see go away.
Don’t get me wrong there are huge potential benefits to taking a DNA test that can help you with your family history research and a DNA test has the potential to solve many genealogical puzzles on your family tree, when used alongside conventional and traditional family history research. However, does the negative potential outweigh the positives? We are always encouraged as researchers to use all the tools that are at our disposal and when used responsibly, a DNA test is just another tool in your genealogical armoury to help you with your research, so why wouldn’t you want to make use of it?
All families have secrets, and it’s almost inevitable that when we undertake genealogical research, that family secrets can emerge. These discoveries could equally of course be revealed by what we discover from our traditional paper research. Discovering family secrets might appear to be exciting, but they can also be confusing, distressing and extremely upsetting for those involved. Once the genie is out of the bottle, sadly you can’t put it back and these secrets can be life changing. So, let me play devil’s advocate for a moment and let’s say you take a DNA test and you are faced with a life-changing discovery, what do you do next?
The weight of responsibility of the person who knows the family secret can be overpowering and consuming and can eventually lead to family rifts. The decision whether to tell family members about the secret is an impossible position to be put in. It can destroy a family and tear up relationships, but equally, if you keep the secret for a long time and eventually the truth comes out and the family discover that you knew the secret all along, it could destroy your own family relationships forever. Therefore, the burden on the shoulders of the secret holder is huge. There is no easy answer to this problem, but it is something that we should all be aware of before undertaking any research and certainly before we consider taking a DNA test.
So can or could the DNA companies do more in this area, the simple answer is a resounding yes! Ancestry do give you a warning at the activation stage of your test, but by that time you have already made a financial investment and purchased your DNA test kit, is it too late then? With DNA test kit sales running into tens of millions, this is a potentially lucrative market for testing companies so why would they jeopardise their financial gain by issuing you with a warning.
I should also add at this point that I have taken both an Autosomal test with Ancestry and a Y-DNA test with Family Tree DNA and I have experienced both sides of the coin. I have benefited from knocking down a long-standing brick wall that I could have only solved by taking a DNA test, but the flip side is, I also have made a life-changing discovery within my own family.
Did I go into taking a DNA test armed with all the facts yes, but was I blinkered, a resounding yes! My viewpoint was that “these life-changing and heart-breaking discoveries only ever happen to someone else”
My warning to you is; just be careful that when you take your DNA test that you are not “that someone else”.
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What an excellent post! I have been researching my family tree for 20 years and have heard so many success stories about DNA testing and how they help knock down those brick walls. But I have always been hesitant about taking this step due to concerns about privacy, data ownership and controversial discoveries. Thank you so much for writing about this. More should be discussed about the downside of DNA testing.
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Thank you Moira! Because the companies involves are making such huge profits from this, why would they publicise the negative side of testing! I just think that morally they have a duty of care to make people realise that there is the chance of making a life changing discovery. It’s a discussion that needs to take place
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Thanks for this post. I agree completely! I’m not sure test-takers today are adequately prepared for what they might learn or what they might be giving up. I wrote about DNA tests some years ago. I called it “dynamite.” https://past-presence.com/2018/02/10/should-you-get-a-dna-test/. Today, I see Ancestry’s new mandate to be fully global. While I have reservations about DNA, still I hold out hope that one day there might be genetic help for the rest of us.
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Thanks Linda and thank you for sharing your link as well. Your blog clearly highlights that there are so many benefits to taking a test, for all of us, but it’s clear that we both also highlight the potential consequences of not thinking fully about the consequences of what your results can reveal. We can all be a little bit guilty of thinking these things always happen to the other person, but as well know only too well, sometimes that other person is you!
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I agree with the first comments. I had several family members do tests to help me with my research, but before they said yes, I had frank discussions to make sure they were aware of and accepted all possibilities for the outcome. We have had no surprises…yet! Another part of this is even more controversial…whose rights outweigh whose? Example, a woman in the 1970/80s gave up several children at birth (she did raise her last few children). Today, two of the adopted children used DNA. A daughter used it solely for identifying her biological parents, not genealogy. She located her biological mother through a DNA match to her half brother. The half brother found his match to their maternal Aunt who convinced the mother to accept the match, against her wishes. The daughter is now trying to force the mother into acknowledging her and any other children she gave up. Ironically the daughter self-admits she was adopted and raised in a loving family and has no health concerns. Her desire is (in my opinion) selfish entitlement. But I recognize the conundrum of whose rights trumps whose; The children’s right to be acknowledged by their biological parents or the rights of the woman whose story is unknown and may be facing her own demons? As much as I dislike government micro-management, the DNA question is a case of justifiable mandates to testing companies to present warnings before accepting payment. It won’t stop the scenario I described, but it would give fair warning to the unwitting finder of secrets, specifically those new to genealogy who are taken in by the commercials.
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There are so many different scenarios and depending on where you sit in a particular family secret or reveal will certainly shape your opinion. No two cases are the same. Another area that I never touched on in my blog is the area surrounding sperm donors. How are there rights protected, I’m not sure. There are so many good things that can come out of DNA testing and I’m sure that medical advances in this area in the future might make testing even more critical. But as a general person taking a test because they are curious about their ethnicity, are they making an informed choice? Are the potential issues explained fully? I’m not so sure they are. It’s a very interesting discussion which I’m sure will continue over the next few years. Thanks for highlighting your example which is certainly something that I have no come across myself before
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it is so very important to consider
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We have to be careful to can’t unlearn something once it’s out there
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I completely agree that testing companies, and Ancestry in particular, should warn people of the negative potentials of testing. I wrote about this years ago.
I’ve gotten over it now, but I had many a sleepless night agonizing over whether to tell the individuals most impacted. I decided against. They had only tested at my behest and cared only for the ethnicity results. Given their health concerns, it really could have taken a terrible toll. I was not willing to risk it and don’t regret my decision. When they’re gone, I will be more open about it. I think Ancestry has a moral obligation, given the potential for shock having a very adverse affect on vulnerable people.
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Thanks Eilene for sharing with me your experiences and it’s reassuring to know that I’m not the only voice raising these questions. These are life changing events that I don’t think people are prepared for. The burden of responsibility that you mention can also be so overpowering for people as well.
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I could tell you stories. I got a friend into doing a tree online. I told her it should be private. She later saw why. She has a famous person in her tree. Not her direct line but a great aunt I believe. She started seeing people create trees online that she thought were relatives and they were not. People not related creating her family tree. I had someone who was a genealogist get mad when I would not show her my private tree. She acted like she was related at first then later admitted she wasn’t. She started bullying me and name calling on ancestry. I reported her to the site. I have found some pro genealogists to be lazy and expect people to do the work for them. I’m sure someone was paying her to research – a distant relative of mine I’m sure. I could go on. Moral : keep your trees private and don’t trust anyone saying they are related unless dna tests prove it.
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Follow my ABC rules A = Accept Nothing
B = Believe Nobody
C = Check Everything
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Really important issue. DNA is such an exciting genealogical chapter, but so far we are going in with our ethical eyes closed – feels like there needs to be a lot more discussion and engagement, especially since the genie is out of the bottle.
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Thanks Liz! I completely agree with you on this subject, we need to be far more careful before we undertake a test. I think it’s important that the negative consequences of taking a test are out in the open for discussion.
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Funnily enough, I’ve seen quite a few posts on Twitter lately, asking what the genealogy community could do better. My answer has always been that I wish someone had told me at the beginning that genealogy can be a fascinating field, but not all discoveries are pleasant ones. And I wish there was some kind of guide as to how to handle such things.
While this also applies to traditional (paper) genealogy, I think the passage of time makes a difference. Just speaking for myself…if I, for example, find records of children dying in the 1800s, it’s sad – but not unusual for that time, as infant mortality and life expectancy were horrendous back then. However, it would be another matter if child bereavement happened to a close relative who is still alive today.
That’s why I agree that DNA tests should come with a warning – because unexpected discoveries usually concern living people. And in fact, with regard to your last point, they are not uncommon at all. I once had an online conversation with CeCe Moore (who is probably the most famous genetic genealogist out there) and I asked her how she managed to crack the Lloyd Ailes case, when it turned out that perpetrator’s own mother didn’t know that her husband wasn’t her son’s father. CeCe told me that misattributed parentage is actually so common that she always watches out for it.
Indeed, a quick Google check will bring up dozens of stories of people who innocently took DNA tests and got unexpected results. Occasionally, it has even led to lawsuits – such as those involving fertility doctors who secretly impregnated women using their own sperm.
That said, I wouldn’t necessarily discourage someone from taking a DNA test. I know of cases where these tests have been extremely useful. One genealogist in Ireland was finally – after over 30 years – able to break down a brick wall and prove his descent from an aristocratic Irish family with the aid of them. I am also aware that they have been a godsend for some adoptees and foundlings, who have had happy reunions with their biological families. Although equally, it must be said things can easily go the other way there. There’s one horrible case on YouTube involving a foundling who tried to find his biological parents via DNA. His father warmly welcomed him, but his mother not only angrily rejected him, but threatened to call the police if he ever contacted her again.
I used to recommend DNA tests to everyone, but with wisdom and hindsight, I now say – please think through every eventuality and whether you can deal with any potentially negative consequences before taking one.
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Thank you Elizabeth for sharing such thoughtful and relevant comments. So much of what you say I have tried to capture in my blog but you have captured the real emotions at the heart of DNA testing. Of course there are wonderful stories of reuniting families and we are fed a diet of wonderful DNS based TV again all with heart warming outcomes. But like you say, not all outcomes are like this and not all family history stories are happy ones. I think people just need to take a step back before letting the genie out of the bottle. We should expect the unexpected and be prepared but I really don’t think everyone is fully prepared for these potential life changing discoveries
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Thank you, Paul. Over the years, I have read various articles about whether people should take DNA tests, but a lot of the time, all they come up with is irrelevant nonsense – bordering on conspiracy theories.
Among other things, they claim that your DNA will be sold to health insurance companies without your consent who will then deny you coverage. Apart from the fact you can’t be denied health care in the UK, I don’t know of a single person whom this has happened to. It would be completely illegal, in any event, for companies to sell your DNA without consent – and most DNA companies don’t offer genetic health testing, anyway.
It’s also worth pointing out here that consumer DNA tests don’t actually analyse your full genome. Ancestry, for example, just looks at certain unique parts of it – known as SNPs – which wouldn’t provide a complete overview of any genetic health abnormalities. I have a special interest here as I have a niece who was sadly born with multiple health problems. It took almost two years of no answers before David Cameron’s 100,000 Genomes project (which looks at the whole micro array) identified what was wrong. Debbie Kennett (who is a far better expert on DNA than I am) told me that we’d never have found the answer from a consumer DNA test – even one that offers genetic health testing.
For a similar reason, there’s no chance (at least in the UK) of the police getting hold of your DNA to solve cold cases. Opponents of DNA testing have a great distrust of law enforcement and often state that they do not want their DNA used to solve cases, resulting in relatives being locked up. However, the UK police use STR DNA testing which isn’t compatible with SNP DNA testing. And that’s before we get onto the fact that there strict laws in the UK about how DNA can be used.
Nobody seems to address the major problem – as to how to deal with potentially distressing life-changing personal discoveries that can result from taking consumer DNA tests. So, I’m very glad to see that you’ve written an article about this.
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There are so many different facets to DNA testing and a lot of the things that you mention do come up in regular DNA discussion groups. However, avoiding the difficult topics that surround DNA testing is for me ducking the real issue, which is why I wanted to bring this subject out in the open to at least get the topic on the table. One of the biggest things for me, which is rarely mentioned, is the burden of guilt that a secret keeper feels once they have made a discovery.
This for me is a real dilemma. Tell the secret and potentially destroy the family, keep it a secret and the story is eventually told and people find out you knew all along, relationships are torn apart forever. People really do need to think long and hard about what they hope to gain from taking a test against what life changing potentials they might create
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