6 ms·

> I’m Open Sourcing My Baby to Save Her and Others Nope, that is not what you are doing.

rvz 7y ago
Exactly, I just read the title and it was very confusing for me to understand what the article was about. Sometimes when I see titles like this, it is better to just get to the point rather than confuse readers with these silly titles. Apart from that, it was a very good read.
- raxxorrax 7y ago
  True, but this is one of the cases where I don't mind clickbait as much. Getting attention should be the goal.
  - rat9988 7y ago
    I do mind it. If your cause is meaningful enough, you don't need to resort to click baity titles.
    - rndgermandude 7y ago
      You people discussing semantics and even "clickbait" in this context truly make me sad.
    - DoreenMichele 7y ago
      So, how would you suggest it be titled or framed? It's a new approach. There's a serious language issue here in that truly new things don't really have proper words or phrases for them yet. They need to be invented. That's usually done by initially borrowing on existing concepts that are as similar in some way as possible. This problem space also seems particularly thorny. Even people who have genetic disorders -- or who have a child with a genetic disorder -- may not understand some basics about how genetics works.
OJFord 7y ago
Yes, that's really confusing, is it seriously only referring to posting photos on Instagram? Even in that ridiculous analogy, that's sharing binaries with the source kept closed!
- dusted 7y ago
  If a program was created in machine language, it's binary IS its code, you don't need the abstraction. If you chose to share this data freely, it's open source. Even if you just play on the words; You open a source of information.
bayesian_horse 7y ago
He may be talking about publishing genomic sequence data, and the data on the treatment he/they created. Maybe some tools to come up with such a treatment.
- ailideex 7y ago
  He should be more specific. Conflating a treatment for some illness with a human infant seems needlessly careless use of language.
  - bayesian_horse 7y ago
    Never heard of clickbait?
- Keyframe 7y ago
  Would that even be legally possible?
  - bayesian_horse 7y ago
    I don't know of significant legal obstacles to publishing your own genomic data, or that of your children. And except for intellectual property issues, I don't see a problem with publishing treatment details, either. There are some issues about providing medical advice without license, but that can be circumvented with a few disclaimers.
    - jhbadger 7y ago
      Many genomicists (such as Craig Venter and George Church) have already made their own genomes available to the public, so no issues there. And I doubt there would be any legal issues for making one's child's genome available either. Obviously there is the ethical issue because an infant can't give consent, but traditionally parents can give consent for medical issues.
deleted 7y ago
[deleted]
amdavidson 7y ago
In a way, that is what he is actually doing: Over the next few months, we will start by asking our collaborators to open source everything from Lydia’s N-of-1— the process, costs, contracts, protocols, assays, cell lines and data.
- ailideex 7y ago
  I'm not sure how you get from open sourcing "process, costs, contracts, protocols, assays, cell lines and data" to open sourcing a baby as "process, costs, contracts, protocols, assays, cell lines and data" is not a "baby" nor is it the source code of a baby. If they licensed their Baby's DNA under some open source license then maybe we could say that they were open sourcing their baby, but: - Don't think that is what they were doing. - Not sure they own the copyright of their baby's DNA. - Don't think that would be legal to do.
  - monkeynotes 7y ago
    I think you guys are unnecessarily being pedantic about the semantics here. Obviously the parents are software tech people, and so there is some poetic license with the headline. It's not really click bait as it is in good faith, and it isn't really misleading to anyone who can understand the bias of tech people to relate everything they do to their passion. It isn't a journalistic article and so the writer should be forgiven for using a touch of their creativity with the title. Had this been from a news organization I would probably feel rather differently.
  - deleted 7y ago
    [deleted]
- mkl 7y ago
  On the face of it that's just publishing. Open source is more about the license you publish with. The only bit that seems like open source is "anyone performing an N-of-1 should be able to tap into this repository as long as they contribute back into it", which implies a share-alike kind of license. Not sure how copyrightable this type of thing is though, so it might be just reliant on good will. I think the title is total clickbait and not what's happening at all.
sbarre 7y ago
This feels like possibly the worst article for you to be coldly pedantic about? I know it's an HN tradition, but empathy is important, friend.
rohanseth 7y ago
Yup, that's fair. We took some creative license here, but couldn't quite figure out how to succinctly explain that we want to go beyond just academic publication and share everything.

rvz 7y ago

Exactly, I just read the title and it was very confusing for me to understand what the article was about. Sometimes when I see titles like this, it is better to just get to the point rather than confuse readers with these silly titles. Apart from that, it was a very good read.

raxxorrax 7y ago
True, but this is one of the cases where I don't mind clickbait as much. Getting attention should be the goal.
- rat9988 7y ago
  I do mind it. If your cause is meaningful enough, you don't need to resort to click baity titles.
  - rndgermandude 7y ago
    You people discussing semantics and even "clickbait" in this context truly make me sad.
  - DoreenMichele 7y ago
    So, how would you suggest it be titled or framed? It's a new approach. There's a serious language issue here in that truly new things don't really have proper words or phrases for them yet. They need to be invented. That's usually done by initially borrowing on existing concepts that are as similar in some way as possible. This problem space also seems particularly thorny. Even people who have genetic disorders -- or who have a child with a genetic disorder -- may not understand some basics about how genetics works.

OJFord 7y ago

Yes, that's really confusing, is it seriously only referring to posting photos on Instagram? Even in that ridiculous analogy, that's sharing binaries with the source kept closed!

dusted 7y ago
If a program was created in machine language, it's binary IS its code, you don't need the abstraction. If you chose to share this data freely, it's open source. Even if you just play on the words; You open a source of information.

bayesian_horse 7y ago

He may be talking about publishing genomic sequence data, and the data on the treatment he/they created. Maybe some tools to come up with such a treatment.

ailideex 7y ago
He should be more specific. Conflating a treatment for some illness with a human infant seems needlessly careless use of language.
- bayesian_horse 7y ago
  Never heard of clickbait?
Keyframe 7y ago
Would that even be legally possible?
- bayesian_horse 7y ago
  I don't know of significant legal obstacles to publishing your own genomic data, or that of your children. And except for intellectual property issues, I don't see a problem with publishing treatment details, either. There are some issues about providing medical advice without license, but that can be circumvented with a few disclaimers.
  - jhbadger 7y ago
    Many genomicists (such as Craig Venter and George Church) have already made their own genomes available to the public, so no issues there. And I doubt there would be any legal issues for making one's child's genome available either. Obviously there is the ethical issue because an infant can't give consent, but traditionally parents can give consent for medical issues.

deleted 7y ago

[deleted]

amdavidson 7y ago

In a way, that is what he is actually doing: Over the next few months, we will start by asking our collaborators to open source everything from Lydia’s N-of-1— the process, costs, contracts, protocols, assays, cell lines and data.

ailideex 7y ago
I'm not sure how you get from open sourcing "process, costs, contracts, protocols, assays, cell lines and data" to open sourcing a baby as "process, costs, contracts, protocols, assays, cell lines and data" is not a "baby" nor is it the source code of a baby. If they licensed their Baby's DNA under some open source license then maybe we could say that they were open sourcing their baby, but: - Don't think that is what they were doing. - Not sure they own the copyright of their baby's DNA. - Don't think that would be legal to do.
- monkeynotes 7y ago
  I think you guys are unnecessarily being pedantic about the semantics here. Obviously the parents are software tech people, and so there is some poetic license with the headline. It's not really click bait as it is in good faith, and it isn't really misleading to anyone who can understand the bias of tech people to relate everything they do to their passion. It isn't a journalistic article and so the writer should be forgiven for using a touch of their creativity with the title. Had this been from a news organization I would probably feel rather differently.
- deleted 7y ago
  [deleted]
mkl 7y ago
On the face of it that's just publishing. Open source is more about the license you publish with. The only bit that seems like open source is "anyone performing an N-of-1 should be able to tap into this repository as long as they contribute back into it", which implies a share-alike kind of license. Not sure how copyrightable this type of thing is though, so it might be just reliant on good will. I think the title is total clickbait and not what's happening at all.

sbarre 7y ago

This feels like possibly the worst article for you to be coldly pedantic about? I know it's an HN tradition, but empathy is important, friend.

rohanseth 7y ago

Yup, that's fair. We took some creative license here, but couldn't quite figure out how to succinctly explain that we want to go beyond just academic publication and share everything.