But wouldn't this conflict to the (natural?) right of an individual to publish their own data? Do I need a permission from all my family tree to be allowed to publish the contents of my DNA?
If, outside of our control, your password and mine matched except for one character and that near match was public knowledge, would you object to me publishing my password here in cleartext?
There's a big difference between publishing your own thoughts - which may have nothing to do with what your family thinks - and publishing your DNA, which is inextricably tied to that of your family. It's my data, which I have a "natural" right to share as I see fit, but it's also very similar to yours, which you have a right to keep private. These rights are incompatible, one has to give.
A password isn't a good analogy for a DNA, imo. DNA only identifies you-- it doesn't unlock additional information about what you've done in the past like a password might. So a closer analogy would be a username.
Then given my username was found somewhere, with that public knowledge of us being one character off, publishing your username would identify me as that user. And I'm not sure that would be wrong.
It's also illustrative that a username is "public" information you might share with someone while a password is private. And I think that's why I'm of the opinion that DNA isn't private information.
> If, outside of our control, your password and mine matched except for one character and that near match was public knowledge, would you object to me publishing my password here in cleartext?
I would certainly prefer that you not do that, but I don't think I should be able to to compel you not to. this is sort of a weird example because there's no clear benefit to posting your password.
a similar example: you and I both live in the same apartment building. you really hate my best friend and don't want them to know where you live. my best friend already knows that you and I live in the same apartment building. should you be able to prevent me from giving my address to my friend so we can hang out?
Ok how about imagine that friend was stalker. Someone potentially dangerous to me and those around me. They know we live in the same building so yes in that case it would make perfectly sense that I could compel you not to give away your address to that person.
imo that's only reasonable if we're actually roommates. if not, you should pursue a restraining order against this person, not try to restrict me from releasing my own address.
What’s special about DNA here? What about aspects of one’s phenotype? Should I be able to publish that I have a certain condition that is known to be genetic?
What makes you think there is such a right, and what does the expression "their own data" mean, exactly?
A person's genomic sequence isn't something that that person created (it existed before the person did!) so there's no obvious analogy with a poem the person wrote or a set of temperature measurements the person made or anything like that.
Arguably you should not be allowed to publish your genomic sequence if you have any identifiable living close relatives because you would be publishing other people's confidential medical data.
> there's no obvious analogy with (...) a set of temperature measurements the person made or anything like that.
But there is! Due to advances in technology, I can actually sequence my own DNA just as I can measure a few temperatures. The only difference is the price of the equipment. I understand there are other implications, some of them unfavorable, so maybe there are pragmatic reasons for making this publication illegal. But pragmatism is not the only source of law, there are also principles! It seems to me that, as a matter of principle, I have the right to measure my bodily functions and publish the results of said measurements. If other people are damaged by that information, this makes me an asshole, but it shouldn't make me a felon nor a misdemeanant.
I don't understand where this principle "I have the right to measure my bodily functions and publish the results" is supposed to have come from. I'd never heard of it before and I don't see why it should be important: more important than the principle of avoiding harm to other people.
Presumably the principle "I have the right to measure my bodily functions and publish the results" would also allow you to publish anything you see or hear, since sight and vision are bodily functions. I don't see why that principle (which I'd never heard of before today) should override all the sensible rules we have about publishing various kinds of things.
> "I have the right to measure my bodily functions and publish the results"
It seems very natural to me. At least, more natural than being forbidden to do so due to the questionable practices of health insurers.
Let's move to a single bit of information. Do you have the right to publish the fact that you are colorblind? Or wether you suffer from "situs inversus" (your heart is on the right side). Or to disclose your own blood type?
Each of these bits of information reveal information about your genome, one bit at a time, thus they have medical implications to other members of your family. I find it abhorrent that somebody from my family could forbid me to disclose each of these bits of information, that I can measure about myself when alone at home. Thus, if I can disclose each of these bits individually, I can disclose them all (how couldn't it be otherwise?), thus I can disclose my whole genome.
You can't apply that kind of reductio ad absurdum to confidentiality: it goes against common sense and the way the law works today. Telling someone in conversation that you are colourblind does reveal something about your genomic sequence, but it's very different from putting your entire genomic sequence online in a way that it can easily be discovered.
A primary school might put photos of the children with serious allergies on the wall in the cafeteria. They don't put that info on their web site. They certainly don't put it in a genealogical database so that anyone can ask whether X has any relatives with a nut allergy.
> A primary school might put photos of the children with serious allergies on the wall in the cafeteria. They don't put that info on their web site.
Alright. But a schoolteacher can take a photo of herlsef, alone at home, and publish it on her own personal website. This is basic freedom of expression.
Will this action create some problems? Probably yes. A stalker neighbor of the teacher may learn where she works due to this website and attack the school and take hostages, or whatever crazy thing. Does this mean that it is OK to forbid schoolteachers to publish their own photos on their own websites? No. That would be an unacceptable attack on freedom of expression.
I like your example with the photos because, in the end, a photo and your DNA are a similar kind of information. Whatever the consequences, you have the right to publish your own.
I don't think photos and DNA are particularly similar. There's the critical difference that DNA from a person provides a mass of easily applicable information about that person's close relatives, information that is not displayed in public like somebody's face is. If this discussion has a point, that's the whole point of it, but you've missed it or are choosing to deliberately ignore it.
