About social media data availability
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana
Hi there, It sounds a very reasonable concern. I would just explain this in a written response to that point in the reviewer’s comments. You don’t necessarily need to do everything each reviewer says, you just need to address their concern, show you’ve considered it and explain why you chose to do what you did, that you have good reason for taking this approach. Best of luck, Emma On Thu, 17 Nov 2022 at 20:17, Xanat Meza via Air-L <air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
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-- Dr Emma L Briant Owner: Maven of Persuasion LLC Fellow at Central European University's Center for Media, Data and Society Associate at University of Cambridge, Center for Financial Reporting & Accountability Patreon: https://www.patreon.com/emmalbriant Website: www.emma-briant.co.uk Author of: *Propaganda and Counter-Terrorism: Strategies for Global Change *from Manchester University Press Co-Author of: *Bad News for Refugees* with Prof. Greg Philo and Dr. Pauline Donald from Pluto Press. Sign up for my Newsletter <http://emma-briant.co.uk/sign-up-for-important-updates/>! Follow me on Twitter @emmalbriant "I thought yesterday was the first day of the rest of my life but it turns out today is." - Steve Martin
Hello! Modern data protection laws rule that anonimyzed data is when the person is not identified OR identifiable. You can say that, given available means today, you cannot guarantee that the individuals cannot be identifiable through data inference. Check out GDPR - the European Data Protection law - and LGPD - the Brazilian one. They both define anonymized data in that way. It is also a good idea to check how the californian data protection act treat this topic. Also, there is a famous study where a huge anonymized data set was openly available and it took just a few hours for many people to be identified through data inference. It might be a nice context for your argument. I hope that helps. Marcela. Em quinta-feira, 17 de novembro de 2022, Dr. Emma Briant via Air-L < air-l@listserv.aoir.org> escreveu:
Hi there, It sounds a very reasonable concern. I would just explain this in a written response to that point in the reviewer’s comments. You don’t necessarily need to do everything each reviewer says, you just need to address their concern, show you’ve considered it and explain why you chose to do what you did, that you have good reason for taking this approach. Best of luck, Emma
On Thu, 17 Nov 2022 at 20:17, Xanat Meza via Air-L < air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
Join the Association of Internet Researchers: http://www.aoir.org/
-- Dr Emma L Briant
Owner: Maven of Persuasion LLC Fellow at Central European University's Center for Media, Data and Society Associate at University of Cambridge, Center for Financial Reporting & Accountability Patreon: https://www.patreon.com/emmalbriant Website: www.emma-briant.co.uk
Author of: *Propaganda and Counter-Terrorism: Strategies for Global Change *from Manchester University Press Co-Author of: *Bad News for Refugees* with Prof. Greg Philo and Dr. Pauline Donald from Pluto Press. Sign up for my Newsletter <http://emma-briant.co.uk/sign-up-for-important-updates/>! Follow me on Twitter @emmalbriant
"I thought yesterday was the first day of the rest of my life but it turns out today is." - Steve Martin _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/ listinfo.cgi/air-l-aoir.org
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Marcela is correct to highlight the dangers of re-identification. You're probably thinking of Latanya Sweeney's work in this space, which has been around for a couple decades and has been highly cited. https://www.forbes.com/sites/adamtanner/2013/04/25/harvard-professor-re-iden... https://dataprivacylab.org/projects/identifiability/paper1.pdf https://dl.acm.org/doi/10.1142/S0218488502001648 ngā mihi / best, Luke On Fri, 18 Nov 2022 at 12:43, Marcela Canavarro via Air-L < air-l@listserv.aoir.org> wrote:
Hello!
Modern data protection laws rule that anonimyzed data is when the person is not identified OR identifiable. You can say that, given available means today, you cannot guarantee that the individuals cannot be identifiable through data inference.
Check out GDPR - the European Data Protection law - and LGPD - the Brazilian one. They both define anonymized data in that way. It is also a good idea to check how the californian data protection act treat this topic.
Also, there is a famous study where a huge anonymized data set was openly available and it took just a few hours for many people to be identified through data inference. It might be a nice context for your argument.
I hope that helps.
Marcela.
Em quinta-feira, 17 de novembro de 2022, Dr. Emma Briant via Air-L < air-l@listserv.aoir.org> escreveu:
Hi there, It sounds a very reasonable concern. I would just explain this in a written response to that point in the reviewer’s comments. You don’t necessarily need to do everything each reviewer says, you just need to address their concern, show you’ve considered it and explain why you chose to do what you did, that you have good reason for taking this approach. Best of luck, Emma
On Thu, 17 Nov 2022 at 20:17, Xanat Meza via Air-L < air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
Join the Association of Internet Researchers: http://www.aoir.org/
-- Dr Emma L Briant
Owner: Maven of Persuasion LLC Fellow at Central European University's Center for Media, Data and Society Associate at University of Cambridge, Center for Financial Reporting & Accountability Patreon: https://www.patreon.com/emmalbriant Website: www.emma-briant.co.uk
Author of: *Propaganda and Counter-Terrorism: Strategies for Global Change *from Manchester University Press Co-Author of: *Bad News for Refugees* with Prof. Greg Philo and Dr. Pauline Donald from Pluto Press. Sign up for my Newsletter <http://emma-briant.co.uk/sign-up-for-important-updates/>! Follow me on Twitter @emmalbriant
"I thought yesterday was the first day of the rest of my life but it turns out today is." - Steve Martin _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/ listinfo.cgi/air-l-aoir.org
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_______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
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Hi, If you're looking for a way to share social media data with additional privacy and confidentiality protections, please reach out to us at the Social Media Archive at ICPSR (somar-help@umich.edu). For sensitive data like you mention, we use a "restricted use" model that includes a strong data use agreement. a virtual data enclave, and manual disclosure risk review. This ensures that data is available for replication and extension but with protections for folks represented in the data. You can learn more about how ICPSR approaches confidentiality here: https://www.icpsr.umich.edu/web/pages/datamanagement/confidentiality/index.h... You can sign up for updates about SOMAR here: https://www.socialmediaarchive.org/ Given the terms under which you collected the data (the understanding you and the admins shared), this data may require additional constraints on its use (e.g., replication only maybe, much like if you had explicit informed consent for a specific research question but not others). We'd be happy to talk to you about options. We are currently testing our infrastructure and curating data for release. We expect to officially launch the archive in early 2023. Take care, Libby -- Libby Hemphill pronouns: she/her/hers Director, Resource Center for Minority Data <http://www.icpsr.umich.edu/RCMD>, ICPSR <http://www.icpsr.umich.edu/icpsrweb/> Director, Social Media Archive <http://socialmediaarchive.org/>, ICPSR <http://www.icpsr.umich.edu/icpsrweb/> Associate Director, Center for Social Media Responsibility <http://csmr.umich.edu/> Research Associate Professor, Institute for Social Research <http://home.isr.umich.edu/> Associate Professor, School of Information <https://www.si.umich.edu/> University of Michigan On Thu, Nov 17, 2022 at 10:54 PM Luke Munn via Air-L < air-l@listserv.aoir.org> wrote:
Marcela is correct to highlight the dangers of re-identification. You're probably thinking of Latanya Sweeney's work in this space, which has been around for a couple decades and has been highly cited.
https://www.forbes.com/sites/adamtanner/2013/04/25/harvard-professor-re-iden...
https://dataprivacylab.org/projects/identifiability/paper1.pdf
https://dl.acm.org/doi/10.1142/S0218488502001648
ngā mihi / best, Luke
On Fri, 18 Nov 2022 at 12:43, Marcela Canavarro via Air-L < air-l@listserv.aoir.org> wrote:
Hello!
Modern data protection laws rule that anonimyzed data is when the person is not identified OR identifiable. You can say that, given available means today, you cannot guarantee that the individuals cannot be identifiable through data inference.
Check out GDPR - the European Data Protection law - and LGPD - the Brazilian one. They both define anonymized data in that way. It is also a good idea to check how the californian data protection act treat this topic.
Also, there is a famous study where a huge anonymized data set was openly available and it took just a few hours for many people to be identified through data inference. It might be a nice context for your argument.
I hope that helps.
Marcela.
Em quinta-feira, 17 de novembro de 2022, Dr. Emma Briant via Air-L < air-l@listserv.aoir.org> escreveu:
Hi there, It sounds a very reasonable concern. I would just explain this in a written response to that point in the reviewer’s comments. You don’t necessarily need to do everything each reviewer says, you just need to address their concern, show you’ve considered it and explain why you chose to do what you did, that you have good reason for taking this approach. Best of luck, Emma
On Thu, 17 Nov 2022 at 20:17, Xanat Meza via Air-L < air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
Join the Association of Internet Researchers: http://www.aoir.org/
-- Dr Emma L Briant
Owner: Maven of Persuasion LLC Fellow at Central European University's Center for Media, Data and Society Associate at University of Cambridge, Center for Financial Reporting & Accountability Patreon: https://www.patreon.com/emmalbriant Website: www.emma-briant.co.uk
Author of: *Propaganda and Counter-Terrorism: Strategies for Global Change *from Manchester University Press Co-Author of: *Bad News for Refugees* with Prof. Greg Philo and Dr. Pauline Donald from Pluto Press. Sign up for my Newsletter <http://emma-briant.co.uk/sign-up-for-important-updates/>! Follow me on Twitter @emmalbriant
"I thought yesterday was the first day of the rest of my life but it turns out today is." - Steve Martin _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/ listinfo.cgi/air-l-aoir.org
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_______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
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Thank you very much for your in depth answers. We rejected the reviewer suggestion and our article has been accepted for publication. Xanat V. Meza Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana El viernes, 18 de noviembre de 2022, 11:50:03 p. m. GMT+9, Libby Hemphill <libbyh@umich.edu> escribió: Hi, If you're looking for a way to share social media data with additional privacy and confidentiality protections, please reach out to us at the Social Media Archive at ICPSR (somar-help@umich.edu). For sensitive data like you mention, we use a "restricted use" model that includes a strong data use agreement. a virtual data enclave, and manual disclosure risk review. This ensures that data is available for replication and extension but with protections for folks represented in the data. You can learn more about how ICPSR approaches confidentiality here: https://www.icpsr.umich.edu/web/pages/datamanagement/confidentiality/index.h... You can sign up for updates about SOMAR here: https://www.socialmediaarchive.org/ Given the terms under which you collected the data (the understanding you and the admins shared), this data may require additional constraints on its use (e.g., replication only maybe, much like if you had explicit informed consent for a specific research question but not others). We'd be happy to talk to you about options. We are currently testing our infrastructure and curating data for release. We expect to officially launch the archive in early 2023. Take care,Libby --Libby Hemphillpronouns: she/her/hersDirector, Resource Center for Minority Data, ICPSRDirector, Social Media Archive, ICPSRAssociate Director, Center for Social Media ResponsibilityResearch Associate Professor, Institute for Social ResearchAssociate Professor, School of Information University of Michigan On Thu, Nov 17, 2022 at 10:54 PM Luke Munn via Air-L <air-l@listserv.aoir.org> wrote: Marcela is correct to highlight the dangers of re-identification. You're probably thinking of Latanya Sweeney's work in this space, which has been around for a couple decades and has been highly cited. https://www.forbes.com/sites/adamtanner/2013/04/25/harvard-professor-re-iden... https://dataprivacylab.org/projects/identifiability/paper1.pdf https://dl.acm.org/doi/10.1142/S0218488502001648 ngā mihi / best, Luke On Fri, 18 Nov 2022 at 12:43, Marcela Canavarro via Air-L < air-l@listserv.aoir.org> wrote:
Hello!
Modern data protection laws rule that anonimyzed data is when the person is not identified OR identifiable. You can say that, given available means today, you cannot guarantee that the individuals cannot be identifiable through data inference.
Check out GDPR - the European Data Protection law - and LGPD - the Brazilian one. They both define anonymized data in that way. It is also a good idea to check how the californian data protection act treat this topic.
Also, there is a famous study where a huge anonymized data set was openly available and it took just a few hours for many people to be identified through data inference. It might be a nice context for your argument.
I hope that helps.
Marcela.
Em quinta-feira, 17 de novembro de 2022, Dr. Emma Briant via Air-L < air-l@listserv.aoir.org> escreveu:
Hi there, It sounds a very reasonable concern. I would just explain this in a written response to that point in the reviewer’s comments. You don’t necessarily need to do everything each reviewer says, you just need to address their concern, show you’ve considered it and explain why you chose to do what you did, that you have good reason for taking this approach. Best of luck, Emma
On Thu, 17 Nov 2022 at 20:17, Xanat Meza via Air-L < air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
Join the Association of Internet Researchers: http://www.aoir.org/
-- Dr Emma L Briant
Owner: Maven of Persuasion LLC Fellow at Central European University's Center for Media, Data and Society Associate at University of Cambridge, Center for Financial Reporting & Accountability Patreon: https://www.patreon.com/emmalbriant Website: www.emma-briant.co.uk
Author of: *Propaganda and Counter-Terrorism: Strategies for Global Change *from Manchester University Press Co-Author of: *Bad News for Refugees* with Prof. Greg Philo and Dr. Pauline Donald from Pluto Press. Sign up for my Newsletter <http://emma-briant.co.uk/sign-up-for-important-updates/>! Follow me on Twitter @emmalbriant
"I thought yesterday was the first day of the rest of my life but it turns out today is." - Steve Martin _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/ listinfo.cgi/air-l-aoir.org
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Hi Xanat, I think you’re right to be concerned about the reviewer’s demand. I would also not feel right about sharing the data. Even if we assume that the data cannot be used to trace back to the group or posters, (which is a very big assumption,) the deal you made with the admins and the group members is that you would only use the data for this study. I think you would be quite right to decline and state you don’t have expressed permission from your participants or your institution to make the data publicly available. Would the editor be someone who could intervene? Best, Sam ____ Sam Srauy, PhD Associate Professor Digital Media and Production Coordinator Oakland University Department of Communication, Journalism, and Public Relations Oakland University resides on the ancestral, traditional, and contemporary lands of the Anishinaabe, known as the Three Fires Confederacy, comprised of the Ojibwe, Odawa, and Potawatomi. The land was ceded in the 1807 Treaty of Detroit and makes up southeast Michigan. In recognizing the history and respecting the sovereignty of Michigan’s Indian Nations, Oakland University honors the heritage of Indigenous communities and their significant role in shaping the course of this region. Further, we recognize the wrongs done to those forcibly removed from their Homelands and commit to fostering an environment of inclusion that is responsive to the needs of First Peoples through our words, policies, and actions. The preservation and perpetuation of customs and traditions of Indigenous nations are essential to our shared cultural heritage. A deep understanding of Native peoples’ past and present informs the teaching, research, and community engagement of the university in its ongoing effort to elevate the dignity of all people and serve as shared stewards of the land.
On Nov 17, 2022, at 8:09 PM, Xanat Meza via Air-L <air-l@listserv.aoir.org> wrote:
Hello everyone! I have a situation with some social media data we collected for a paper that is currently under revision. The situation is complex because we collected this data from a Facebook group dedicated to a rare medical condition back in 2017, when social media data rules were not as strict as they are now. When we requested ethics review from our institution, they even told us we did not have to do anything in particular and got the study approval without much difficulty. Therefore, we requested permission to the group administrators to collect posts, posted a permission request for the group members, asking them to send us a message if they wished to opt out from the study, and collected one thousand posts by hand. We noted that there were many researchers in this group and that the members participated in surveys and medical studies frequently and with enthusiasm, so we thought at that time that an opting-out format would be enough. The data basically consists on user name, the texts in the posts, date and time of the posts, number of replies, and reactions. We separated the user names and replaced them with alphanumeric codes. Now, a reviewer of our paper is insisting that we MUST share this data openly because it is anonymized. However, we think that it should be available upon request, as social media data management has become stricter in recent years, particularly on the case of data from vulnerable communities. If we place this data related to a rare medical condition in an open repository, even people who are not researchers may have access to it and use it to bully this Facebook group, even if in theory, they could not target specific users. Does anyone have any ideas or advise on how we can respond politely to this reviewer that it is safer for everyone to keep the data available upon request? Xanat V. Meza
Ph.D. Kansei, Behavioral and Brain SciencesUniversity of Tsukuba M.A. Media and Communication Yeungnam University B.D. Graphic Communication Design Universidad Autonoma Metropolitana _______________________________________________ The Air-L@listserv.aoir.org mailing list is provided by the Association of Internet Researchers http://aoir.org Subscribe, change options or unsubscribe at: http://listserv.aoir.org/listinfo.cgi/air-l-aoir.org
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participants (6)
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Dr. Emma Briant -
Libby Hemphill -
Luke Munn -
Marcela Canavarro -
Sam Srauy -
Xanat Meza