DNA sequences should be viewed differently than other personal data, since they are personal not only for you, but also for your children, grandchildren, siblings, parents, etc. When you make a decision to share this data, you are making a decision for them, too. The implications might not be the same for your great-great-grandchildren, but who can tell whether the impact will be better or worse? How will it be possible to use the information in the future, when technology, science, law, politics, and social customs might be quite different?
We often see complaints about big companies selling their users' personal data, but in this case the decision lies with each individual who shares his DNA sequence. Do you believe it is ethical to share your relatives' personal data without their consent?
On a similar process I find disturbing that when a friend decides to use WhatsApp and the decide to share their contacts with (f...ing) Facebook, they give them my name, surname, phone number, and who knows what else is in that contact card.
They don't ask me, I don't approve that, but still Facebook gets my data. Same applies for Viber, Signal, etc. of course.
It doesn’t matter, you only need a small % of your contacts to leak their contacts to Facebook/WhatsApp and it’s trivial to build a graph of almost everyone you know
You are leaving a DNA trail in your wake, and it's only private or personal insofar as no one looked at it. But it seems like it's something that we really have no hopes of keeping private over any reasonable timeline into the future.
Aren't we moving the goalposts as technology advances?
For instance, your DNA used to be private in the past simply because no one could do anything with it even if they would get it. So you benefited from this privacy aspect by default. In the next 20 years your DNA will probably be in multiple databases somewhere even if you never offered it to companies.
Similarly, in the past you may have benefited from the privacy of your own home. You could say or do anything you wanted and that would be kept private (for the most part). Now, with all the "always-on" smartphones and smart home devices and surveillance cameras, everything you do or say in your home will be on someone else's server, which can be data mined, sold to third-parties, requested by various law enforcement agencies, and stolen by cybercriminals.
It seems to me that from your point of view and with enough technology advances we'll have 0% privacy in the future. Everything around us will listen to us and watch us, and then others, with who you may have never interacted, will also get to see and analyze all of that data.
So the technology could enable all of this -- but the question is should we let it? Privacy is a human right for a very good reason -- abuses against someone's private life can lead to all sorts of nefarious things against that person, whether it's something as "benign" as increasing your insurance rates to not offering your free/cheap healthcare because you "live too dangerously" or malicious actors and government agents using it to destroy your life for profit or personal vendettas.
In the case of smart devices in your home we do still have a choice -- just don't buy them or use them, or ensure that the ones you do use have strong protections, etc. However with DNA it is like you are screaming it in countless public places daily and it was only ignorance that protected its privacy. That time is rapidly coming to a close. The cost and time of processing it, once prohibited, has fallen through the floor and soon enough just doing mass dragnets is going to be trivial. It seems likely that generating facial profiles from DNA is not too far off either. Couple that with a facial recognition system and you have a deep identity.
We should fight it as possible, but we'll see how far that gets us.
Unless research in this area is policed, outlawing the practice will drive it underground or to another country with less qualms. One problem with trying to ban incorporeal things like genetic sequencing algorithms is that you can't control supply like you can with guns or really any physical good that has a high capital expenditure requirement.
You say "should we let it" like that wouldn't mean getting way more draconian about policing information. How do you prevent people from sharing their own DNA? How do you keep people from reading and remembering it?
Shoot! Yes! My partner showed me a story about this recently where a person reconstructed potential faces from DNA collected from discarded cigarette butts, hair, and other items.
It's not about the ability to look at something, face image or DNA. It's about ability to remember that information and use it.
Some argue that they want ownership of information that concern themselves, and right to deny others from handling that without explicit consent. Others argue that collection is alright but sharing (with or without exceptions) isn't. Others disagree completely and say that information belongs to whoever holds it, as it's immoral to deprive person of rights to have memories. It's also arguable that privacy laws may apply differently between persons and companies. Or between natural and artificial memory banks. Or that different rules should apply based on volume of data stored, like number of persons involved. I've read many different opinions on this matter. Lean towards some, but haven't firmly decided on any.
I don't think this will be fully resolved until someone would invent eidetic memory drugs or implants or something like that, and we'll have to erase the current boundary between humans and machines.
I agree with you. However, I felt important pointing out that we already have something like that happening, where users consent to share their personal data and in the process share data that isn’t really theirs as well. Just to clarify, i do not think that it is supposed to make sharing data of other people in this way any less bad.
Famous example (albeit of a smaller significance, since the data of users shared was public for all their friends) - the whole Facebook/Cambridge Analytica scandal. Users were giving up their data using their survey app, but they ended up sharing the profile info of their friends as well without their permission.
You literally drop your DNA in public everywhere you go. It’d be like walking around dropping copies of your bank statements 24/7 and then saying that they are private. Nearly all of it is a straight clone off the main branch anyway. So I wouldn’t worry about it too much. Source—I do genomics work at a cancer lab.
Right, however in public its a bit more challenging to identify a DNA sample with the identity of its owner. One can get this via a targeted attack, yet this seems in the same spirit of going through someone's trash to find their bank statements.
That’s a fair point. Operating a global database that connects someone’s DNA to their identity brings up different issues than just being able to easily sequence someone’s DNA in a “targeted attack”. I think worrying about keeping your DNA private is a fools errand (See oxford nanopore and extrapolate), but discussing what companies can do with these databases is probably a more fruitful effort.
We often see complaints about big companies selling their users' personal data, but in this case the decision lies with each individual who shares his DNA sequence. Do you believe it is ethical to share your relatives' personal data without their consent?