A respected colleague of long experience posted a link to this article in Forbes about the FB brou-ha-ha.
A respected colleague of long experience posted a link to this article in Forbes about the FB brou-ha-ha. I think it's one of the better thought ones I've seen, thus far, and makes points well and clearly*. The only significant quibble I have is that the author suggests the checkbox she clicked telling 23andMe they could use her genetic info for research is an answer. That betrays even her lack of understanding of informed consent.
http://www.forbes.com/sites/kashmirhill/2014/06/29/facebook-doesnt-understand-the-fuss-about-its-emotion-manipulation-study/
The short version is that a checkbox leaves open questions of coercion, vulnerable populations, comprehension, and judgment, to pick a few. These all have non-colloquial, technical definitions in the context of consent, and that's what I'm referencing.
The longer version is that I looked up 23andMe. IF you read all the info on all the pages, even without signing up, they are trying to encourage you to participate in research in a marketing oriented way, so I think that's kind of uncool, as well as trying to get you to sell their product, but they also make it clear that you do NOT have to opt in, and it is an opt in, not an opt out. Plus, they reference GINA repeatedly.
Otoh, I know what GINA is. I even know what illumina, CMS, CLIA, and SNPs are, which are listed in various places. Sucker bet that the average consumer, even with their explanations of some things, still doesn't know what any of that means. (As an aside, what the hell is a government agency doing in association with a commercial company that is collecting people's genetic information?)
Furthermore, while GINA may provide some protection, you have no idea what might happen to your genetic material or your genetic information. This consent is FOREVER. In a real informed consent situation, there is a required paragraph that says you may withdraw your consent at any time, and gives specific details (names, contact numbers, snail mail or email addresses, etc.) of how to do so. That, I did not see on the website (which may be because I didn't sign up for anything). Although I'm sure you can contact the company, I am not sure you can get them to go in and pull your samples and info.
So it's a pretty good article. Last of all, though, you should read the included copy of the posted statement from FB. I will not even start in on it. I'll just say that it makes it pretty clear that they are, to say the least, "tone deaf".
*Shockingly, the research community is reportedly appalled. Where is my Home Alone smiley? P.S. regardless of the fact that there are always plenty of questions to be raised in doing research, there are a lot more sincere people trying to do things rightly than there are hypocrites, who are and will always exist in any field.
http://www.forbes.com/sites/kashmirhill/2014/06/29/facebook-doesnt-understand-the-fuss-about-its-emotion-manipulation-study
http://www.forbes.com/sites/kashmirhill/2014/06/29/facebook-doesnt-understand-the-fuss-about-its-emotion-manipulation-study/
The short version is that a checkbox leaves open questions of coercion, vulnerable populations, comprehension, and judgment, to pick a few. These all have non-colloquial, technical definitions in the context of consent, and that's what I'm referencing.
The longer version is that I looked up 23andMe. IF you read all the info on all the pages, even without signing up, they are trying to encourage you to participate in research in a marketing oriented way, so I think that's kind of uncool, as well as trying to get you to sell their product, but they also make it clear that you do NOT have to opt in, and it is an opt in, not an opt out. Plus, they reference GINA repeatedly.
Otoh, I know what GINA is. I even know what illumina, CMS, CLIA, and SNPs are, which are listed in various places. Sucker bet that the average consumer, even with their explanations of some things, still doesn't know what any of that means. (As an aside, what the hell is a government agency doing in association with a commercial company that is collecting people's genetic information?)
Furthermore, while GINA may provide some protection, you have no idea what might happen to your genetic material or your genetic information. This consent is FOREVER. In a real informed consent situation, there is a required paragraph that says you may withdraw your consent at any time, and gives specific details (names, contact numbers, snail mail or email addresses, etc.) of how to do so. That, I did not see on the website (which may be because I didn't sign up for anything). Although I'm sure you can contact the company, I am not sure you can get them to go in and pull your samples and info.
So it's a pretty good article. Last of all, though, you should read the included copy of the posted statement from FB. I will not even start in on it. I'll just say that it makes it pretty clear that they are, to say the least, "tone deaf".
*Shockingly, the research community is reportedly appalled. Where is my Home Alone smiley? P.S. regardless of the fact that there are always plenty of questions to be raised in doing research, there are a lot more sincere people trying to do things rightly than there are hypocrites, who are and will always exist in any field.
http://www.forbes.com/sites/kashmirhill/2014/06/29/facebook-doesnt-understand-the-fuss-about-its-emotion-manipulation-study
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