5 ms·

Just take a look at this silly hand wringing editorial about the innovation described in this article http://plosgenetics.org/article/info:doi/10.1371/journal.

by temphn 16y ago

Just take a look at this silly hand wringing editorial about the innovation described in this article http://plosgenetics.org/article/info:doi/10.1371/journal.pgen.1000965 http://plosgenetics.org/article/info:doi/10.1371/journal.pge... When the response to new and cool is "you didn't do it according to protocol", something is definitely wrong.

thefool 16y ago
The thing here is that this is the start of a different way of doing science, and as such you want to be careful of the precedents you set. It's a good thing that someone is thinking about how all this stuff is going to be protected. The protocol there is one of ensuring anonymity for people that want to remain anonomous. Making sure that that sentiment is retained moving forward is not a bad thing.
mbreese 16y ago
IRB review is a very important part of modern science, and the system is simply not setup to deal with research that hasn't been throughly cleared by a review board. You could consider IRB approval the first step in peer-review: your study is worthwhile and you aren't going to do anything unethical. IRBs are designed to protect the subjects/patients, the researchers, and the institutions. To skip that step is pretty unusual, and some hoops had to be jumped through in order to deal with it. I think the fact that the 23andMe study was published at all was a big leap, and represents the flexibility inherent in the scientific community. The response to "new and cool" wasn't "you didn't do it according to protocol". It was: since you didn't do it according to protocol, we need to verify that you did this ethically. Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data. That is what IRBs are good for. In a world where movies constantly are pointing out how scary/evil/unethical scientists can be (Andromeda strain, Splice), these checks are very important, even if it slows things down a little.
- anamax 16y ago
  > Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data. Apart from privacy and "ownership of one's genetic material", why? Saying "Joe Smith's DNA contains a vital clue to solving parkinson's" doesn't affect Joe's ability to monetize. Saying the same about "unspecifed_37" doesn't affect anyone's privacy.
  - jokermatt999 16y ago
    Look up the story of Henriette Lacks and her family's reactions to finding out scientists were using her cells in all kinds of experiments. http://en.wikipedia.org/wiki/Henrietta_Lacks http://en.wikipedia.org/wiki/Henrietta_Lacks There was a good episode of Radiolab about her, as well as a good interview on Dr Kiki's Science Hour with the author of the book written about her life and legacy. Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
    - kingkilr 16y ago
      There's also a really good Law and Order episode titled, "Immortal" from this past sesaon, based on this.
    - chroma 16y ago
      Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity. I don't want to be callous, but look at the cost-benefit calculation: Cost: One disgruntled family. Benefit: Polio vaccine. Treatments for cancer, HIV, various toxins, and other stuff I don't know about in the 50,000 research papers on HeLa. I am not exaggerating. There really are over 50,000 papers about HeLa. I think the system worked very well in this case.
      - mbreese 16y ago
        That doesn't really change the fact that there were issues with her informed consent. When HeLa cells were first derived, most of the benefits weren't even on the radar. I don't think the initial investigators could have imagined what would have happened, let alone the patient. I think this is a case where the system didn't work... but more because the science got ahead of the ethics. Sure, excellent science has been done with HeLa cells, but it all started with an ethically ambiguous beginning. For example: why do we know her name? This alone should never have happened.
kragen 16y ago
Please consider the state of scientific human subjects research before the institution of IRBs, and the problems that resulted: http://canonical.org/~kragen/costs-lives.html http://canonical.org/~kragen/costs-lives.html I do not read the editorial you linked as saying, "You didn't do it according to protocol." The editorial, in fact, is explaining why PLoS Genetics thought the study was okay to publish, how the 23andMe study strictly complied with existing protocol and went above and beyond its requirements, and how the IRB system needs to be improved to deal with GWAS.

by temphn 16y ago

thefool 16y ago

The thing here is that this is the start of a different way of doing science, and as such you want to be careful of the precedents you set. It's a good thing that someone is thinking about how all this stuff is going to be protected. The protocol there is one of ensuring anonymity for people that want to remain anonomous. Making sure that that sentiment is retained moving forward is not a bad thing.

mbreese 16y ago

IRB review is a very important part of modern science, and the system is simply not setup to deal with research that hasn't been throughly cleared by a review board. You could consider IRB approval the first step in peer-review: your study is worthwhile and you aren't going to do anything unethical. IRBs are designed to protect the subjects/patients, the researchers, and the institutions. To skip that step is pretty unusual, and some hoops had to be jumped through in order to deal with it. I think the fact that the 23andMe study was published at all was a big leap, and represents the flexibility inherent in the scientific community. The response to "new and cool" wasn't "you didn't do it according to protocol". It was: since you didn't do it according to protocol, we need to verify that you did this ethically. Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data. That is what IRBs are good for. In a world where movies constantly are pointing out how scary/evil/unethical scientists can be (Andromeda strain, Splice), these checks are very important, even if it slows things down a little.

anamax 16y ago
> Imagine what would have happened if they used someone's DNA in their study without their knowledge. When you're talking about publishing links between diseases and people's DNA, you better be damn sure you have permission to use their genetic data. Apart from privacy and "ownership of one's genetic material", why? Saying "Joe Smith's DNA contains a vital clue to solving parkinson's" doesn't affect Joe's ability to monetize. Saying the same about "unspecifed_37" doesn't affect anyone's privacy.
- jokermatt999 16y ago
  Look up the story of Henriette Lacks and her family's reactions to finding out scientists were using her cells in all kinds of experiments. http://en.wikipedia.org/wiki/Henrietta_Lacks http://en.wikipedia.org/wiki/Henrietta_Lacks There was a good episode of Radiolab about her, as well as a good interview on Dr Kiki's Science Hour with the author of the book written about her life and legacy. Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity.
  - kingkilr 16y ago
    There's also a really good Law and Order episode titled, "Immortal" from this past sesaon, based on this.
  - chroma 16y ago
    Her family was deeply disturbed by what was happening at first. Progress is necessary, but so is people's dignity. I don't want to be callous, but look at the cost-benefit calculation: Cost: One disgruntled family. Benefit: Polio vaccine. Treatments for cancer, HIV, various toxins, and other stuff I don't know about in the 50,000 research papers on HeLa. I am not exaggerating. There really are over 50,000 papers about HeLa. I think the system worked very well in this case.
    - mbreese 16y ago
      That doesn't really change the fact that there were issues with her informed consent. When HeLa cells were first derived, most of the benefits weren't even on the radar. I don't think the initial investigators could have imagined what would have happened, let alone the patient. I think this is a case where the system didn't work... but more because the science got ahead of the ethics. Sure, excellent science has been done with HeLa cells, but it all started with an ethically ambiguous beginning. For example: why do we know her name? This alone should never have happened.

kragen 16y ago

Please consider the state of scientific human subjects research before the institution of IRBs, and the problems that resulted: http://canonical.org/~kragen/costs-lives.html http://canonical.org/~kragen/costs-lives.html I do not read the editorial you linked as saying, "You didn't do it according to protocol." The editorial, in fact, is explaining why PLoS Genetics thought the study was okay to publish, how the 23andMe study strictly complied with existing protocol and went above and beyond its requirements, and how the IRB system needs to be improved to deal with GWAS.