To not want my DNA on 23 and me / Ancestry etc?

It's not about current use so much.

It's about future implications we don't yet know.

Since both my parents have done it, it could potentially create an issue for me. Or my son. Or my grandchildren.

We don't know and this is part of the problem.

This information is potentially very sensitive.

We may think it ridiculous now, but I'm not sure that anyone who has Jewish ancestry would feel similar. We only have to consider how recently genocide in Rwanda and Bosnia happened on the basis of ethnicity too.

The law is only as good as the government in charge. There are circumstances in which this could change.

We just don't know.

Personally I think some of this probably isn't something to worry about in the UK but it might be if you live somewhere else.

There there's also the prospect of genetically targeted weapons in the future which in the context of COVID is a possibility.

It's not so fun as we think it is when we examine how far this data could go and how powerful it is.

@RedToothBrush I'm really sorry if this is a thick question, but how does access to DNA information about others impact information about you? I mean apart from knowing who your relatives are, any diseases they might be prone to...do you mean they'll say "well, we know that several members of your family had this particular health condition"?

I was under the impression the tests were pretty unreliable anyway.

In general, they worry me, but I had hoped to escape any impacts from other people giving away information.

They can only use DNA certain sites that do allow it, and users should be aware of that when they sign up to those sites. I think some, if not all of them, allow you to opt in/out for use for this purpose. Definitely an ethical grey area though.

They can't - as it stands. It's not like a big database anyone can access and look up your DNA. You'd have to have agreed to that in the Ts and Cs.

Yes, the database must exist behind it, but what's publicly available is only to other testers and only the information shared by their matches.

Law enforcement DNA database are an entirely different thing.

Some of the commercial websites do share DNA with medical testing etc., but it's not linked back to you, all anonymous.

In the US law enforcement agencies are using dna submitted this way to identify both criminals and victims

https://en.m.wikipedia.org/wiki/Investigative_genetic_genealogy

I mean that in terms of being able to make a decision myself, I don't have that choice anymore as family members have put their DNA out there meaning that if it is used for data mining in some way, they already have enough information about me without me consenting to anything.

Just to add - I do agree that it's irresponsible to market it in a very light-hearted, just a bit of fun way, though. I think these companies should discuaa the downsides of what they're offering much more seriously and ensure that they have full informed consent from those who are testing.

@RedToothBrush "Effectively I'm screwed as a result. That information is now out there."

why are you screwed by other people putting this info out there please?

I hope no one in my family is daft enough to do it but I didn't realise it would affect me if they did.

I think you're not unreasonable not to want to - it certainly shouldn't be mandatory. But it is something where an informed choice is possible.

The privacy rules are pretty clear if you read the TS and Cs on these sites. They do differ and occasionally change.

The vast majority of commercial DNA sites (definitely Ancestry and 23&me, by far the biggest two) don't allow law enforcement to use them for cold case solving.

Also, once your data is on there, you do have control over who sees it. You're literally told just who you share DNA with and what amount/percentage. Nothing about what that DNA says about you or anything. On some sites you can see on which part of which chromosome you share DNA with someone.

Your personal data attached to your account is entirely within your control as to what you share, just like any other social media.

The companies do tend to hold you sample and results for quite a while. And obviously there is an IT/security question here, as we've seen recently with hacks and data breaches etc.

Also, is your DNA really just yours? Considering how DNA is passed down the generations, you share considerable chunks of it with many other people, and the vast majority of the human genome is identical anyway.

Your point as to adoption etc - the only way DNA testing is useful to these people is for others who do know their family backgrounds to test. From their perspective, they need more people to test. But that doesn't mean you have to.

@Catza what was this documentary please.

Thank you!
I was trying to think of where it was I'd come across these issues.
I will never do it. I do have some tin-hat-tendencies (don't get me started on JFK). But for me, definite no.

23andme didn't "get hacked". Individual users accounts were accessed because their passwords had been leaked in data breaches from other websites.

They had used the same password for 23andme and a different website, and the other website had a data breach.

However yes I would be wary about doing a generic test for fun as it's unclear what the long term repercussions are, including if your data is stolen.

If you don’t like it then don’t do it. There’s no need to preach or reason to others though. It’s not something I’d be doing, but my husband did and I didn’t feel the need to ‘educate’ him on it. Just let your family do what they want!

what are they going to do with it?

#Application for life insurance: Denied

I won't be getting mine tested.
The repercussions of an anonymous company owning, selling, analysing our data at such a fundamental level should worry people more. It's not 100% secure and you have no or little control over what happens to it.

Are insurance providers checking DNA databases? First time I hear about it.
Either way, I managed to get a mortgage without needing life insurance so I am not overly concerned about that.

The insurance type stuff is the big worry.

Certain people may not be able to get life insurance. That has implications for mortgages.

Stuff like that.

I am happy to be on DNA database. I understand what you are saying re data being sold but, pragmatically, what are they going to do with it? It's not like someone is going to plant my DNA at the murder scene...
On the other hand, if I go missing and fall a victim of a serial killer I'd love for there to be a DNA base which will allow my ancestors to figure out who I was when my body is found 60 years later. I know it's a weirdly specific example but I recently watched a documentary on Disney+ when someone has been able to trace living relatives of a body which was found in the US in the 60s. It would not have been possible without an international database of exactly the sites you are talking about.
Plus, anything I can do to make police matters quicker to resolve is a win for me.

I think the police hold about 8million DNA profiles on record now, which was a number that shocked me tbh.

From October when we go to the EU we will have to provide fingerprints.

If I'm honest I think this is the way the world is going and I think too many people don't question it, saying 'well I have nothing to hide and if it helps stop crime I'm in'. Except it's not that simple.

I think your concerns are well grounded.

Ancestrys current t&C's do not allow the use of their DNA for use with law enforcement. They have much more narrowly defined and restricted t&C's than some of the other services. The others are much more unnerving to me.

It's not tin foily to think about.

OP there was a really interesting BBC radio documentary about exactly your completely logical worries! It's called The Gift.

There are legal protections but they can be circumvented.

I have a terrible medical history and some things could be genetic. But I have no children so I made the choice.

I was so disappointed, I am so boring, a little bit of Yorkshire, about the same for Ireland and then about 1% random Finnish!

I did find my dad's cousin so we have filled parts of each other's trees out.

But the idea of a massive global dna database that people have blindly gone into when previously your dna was only taken if you'd committed a crime really scares me. Does that make me a bit tin hat ? Not something i am usually that's for sure

Until very recently it was anyone who had a DNA sample taken by the police was added tot he database. So if you were arrested, but innocent or if you gave DNA to be ruled out of an investigation your DNA was kept.