Re: [Air-L] a question about privacy protection and copyright in Internet research
Well what actually happens when you put something on facebook? it isn't like you are sending a private letter to a group of friends. it is much closer to going to a shopping mall where all the video cameras are tracking your every move. It isn't your property you are acting within... it is facebooks, in doing that acting you are agreeing with the terms that they put upon you. It isn't about your or my ethics Michael at that point, it isn't about what we should do or our ethical systems, it is then about the agreement that we consent to. There are no subjects to ask what you want to ask if you are doing document based research. You can ask the webpage, but your browser probably is not going to respond. The assumption you are putting forth is one that... there are subjects and it matters what their opinion is, but I want to say, when I read and interpret a book, a newspaper, a public record or any other published document, I need not consider that. You want to say perhaps that 'they don't know they are publishing it' and even if they publish it 'they might not want it researched' but that is not something we afford authors of published documents. We could, but I think it is going the wrong direction. That debate, I'd argue ended, when they put on the web in a manner similar to a published document in which it is assigned a copyright and is freely available to anyone without login. I've already stated that login may change that status. I think you can do research on a database with personally identifiable positions without running afowl of u.s. standards for research ethics and I mostly agree with that personally. If the data was freely given to a corporation and then the corporation freely gives it to you, then I don't think anyone is going to have any issue with you using that data as it was a. previously gathered and b. you are not interacting with the people. It might not be something people like, but I think that is generally the way it works. We have many colleagues doing this research right now actually, they all seem to have had their material passed by IRB's, most I suspect with waivers, but some perhaps with deeper reviews. I am fairly certain that if Facebook gave me data that they collected with personally identifiable information in it, and it was given under contract, and I ran that by the irb they would treat it much like they treat personally identifiable census data or use of standard social research data sets with individually identifiable data, that is... unless it contains private information, which as I said is a problematic construct, it is probably going to get a waiver, and the debate about whether these are human subjects or not, won't come up gotta run to an appt. but look forward to rejoinders. On May 10, 2011, at 10:33 AM, Michael Zimmer wrote:
I find this logic troubling, Jeremy.
In our earlier exchange about Facebook suddenly making something public that was originally shared to a limited group, you seem to be placing strong preference on what a platform might afford at a given time (does it make something publicly available) rather than what the subject expected/intended/currently desires. That's not how I wish to have research ethics determined.
And below you again now that "Texts are not people. Representations of people are not people", and appear to state that unless you are directly engaging with a human, you're not engaging in human subject research. Elizabeth has replied in part on this, but just to add: your logic seems to indicate that I can do research using a database of personally-identifiable and sensitive information, publish my results, etc without ever having to worry about ethics related to "human subjects" since I'm merely using a database, a "representation of people". Is this your position?
-mz
-- Michael Zimmer, PhD Assistant Professor, School of Information Studies Co-Director, Center for Information Policy Research University of Wisconsin-Milwaukee e: zimmerm@uwm.edu w: www.michaelzimmer.org
On May 10, 2011, at 8:33 AM, jeremy hunsinger wrote:
I think i already mentioned the private information exception. But past that, as I said, instead of complicating it, i argue that we we need to simplify it. Texts are not people. Representations of people are not people. Whatever claims people have on those objects are not claims against their nature, they are claims to ownership or copyright. That is the line I think we have to take here. Things like documents are not research subjects. They are research objects, research quasi-objects, but they don't rise to the level of being a research subject no matter what exterior subjective claims people put on them. If they have private information embedded in them, that is still an object, the issue with private information is not that the object becomes a research subject, but that the claim of a subject overrides the interests of the researcher in that case. So my argument is that the private information claim is not that it transforms the document, but it creates a clai m by one person upon another based on the claim of privacy, however... very few things once published rise to that claim of private, especially once they are published, for instance a person's name on a document published is not private, it isn't private in the newspaper, it isn't private on public documents, nor are other identifying characteristics, height, demographic features, even salary might be public. So what rises to the claim of private in a public document? Medical records are one... though even then medical records can be made public by any number of sources and once public, might not be made private again. so... this line... seems really to be far, quite far away. Treat a published source as a published source, it is not a research subject.
On May 10, 2011, at 8:58 AM, Elizabeth Buchanan wrote:
Hey, all,
I'm late in adding a couple of points about this discussion. From a US-human subjects perspectives (talking more regulatory), I disagree with Jeremy's hard line "if you are dealing with texts, you are not dealing with research subjects." I disagree with it from disciplinary and philosophical perspectives, but, that would take us down the road of another discussion.
But--from a US regulatory perspective,(f) Human subject means a living individual about whom an investigator (whether professional or student) conducting research obtains
(1) Data through intervention or interaction with the individual, or (2) Identifiable private information.
So, I would argue that to patently reject "texts" as subjects is a risky choice and not a line that holds a lot of ethical weight; disciplinary specificity is very important for this discussion--these decisions are not, should no,t be based on only one set of criteria; with online research, as we know, there are community (or venue) norms, ethics, practices; disciplinary norms, ethics, practices; extant research ethics guidelines at the federal/country/commission level; and, increasingly, third party (eg, Facebook, etc etc) norms, "ethics", practices. All of those must be considered in making these decisions about research practices.
Regarding the issue of public v private (which I agree with Michael is a fluid and moving dichotomy), again, from a regulatory perspective, there are boundaries:
From 101 (b)(2) and 101(b)(4) in the CFR 45:
Regarding online observation and exemptions for existing data, the issue of researcher "entry requirements" and "threshold of access" is significant. The OHRP standard is "what is readily ascertainable." If there are costs, restrictions, or other measures that prevent data from being "readily ascertainable, "the exemption does not apply and the data should be considered private. (This comes from a report in draft form, written with a colleague from the Office for Human Research Protections here in the US.If you are looking for more regulatory guidance, I can share this report).
Recently, I gave a few talks with the lawyer who advises OHRP, and while they have issued no formal guidance on Internet research in particular, some interpretations have been presented. I can share our powerpoints on Internetresearchethics.org for those interested.
Best regards,
e.
Elizabeth A. Buchanan, Ph.D. Endowed Chair in Ethics Director, Center for Applied Ethics University of Wisconsin-Stout PO Box 790 Menomonie, Wisconsin, 54751-0790
buchanane@uwstout.edu
Principal Investigator, Internet Research Ethics Commons internetresearchethics.org (NSF Project # 0924604)
elizabeth@internetresearchethics.org
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Jeremy Hunsinger Center for Digital Discourse and Culture Virginia Tech Words are things; and a small drop of ink, falling like dew upon a thought, produces that which makes thousands, perhaps millions, think. --Byron
Courts are above business agreements so your agreement with Facebook does not stop at the Facebook company level and can go to courts and rulings can turn nasty on Facebook if they are nasty. I live in a society governed by laws not men or women or computers. User Agreements are based on laws. Students at my school brought a case against Facebook and forced changed to their privacy practices. Peter Timusk at571@ncf.ca ptimusk@sympatico.ca web: www.crystalcomputing.net blogs www.cyborgcitizen.org -----Original Message----- From: air-l-bounces@listserv.aoir.org [mailto:air-l-bounces@listserv.aoir.org] On Behalf Of jeremy hunsinger Sent: May-10-11 10:51 AM To: Michael Zimmer Cc: air-l@listserv.aoir.org Subject: Re: [Air-L] a question about privacy protection and copyright in Internet research Well what actually happens when you put something on facebook? it isn't like you are sending a private letter to a group of friends. it is much closer to going to a shopping mall where all the video cameras are tracking your every move. It isn't your property you are acting within... it is facebooks, in doing that acting you are agreeing with the terms that they put upon you. It isn't about your or my ethics Michael at that point, it isn't about what we should do or our ethical systems, it is then about the agreement that we consent to.
But we're not talking about courts or business agreements, but what research ethics allows.... On May 10, 2011, at 10:38 AM, Peter Timusk wrote:
Courts are above business agreements so your agreement with Facebook does not stop at the Facebook company level and can go to courts and rulings can turn nasty on Facebook if they are nasty. I live in a society governed by laws not men or women or computers. User Agreements are based on laws. Students at my school brought a case against Facebook and forced changed to their privacy practices.
Peter Timusk at571@ncf.ca ptimusk@sympatico.ca web: www.crystalcomputing.net blogs www.cyborgcitizen.org
-----Original Message----- From: air-l-bounces@listserv.aoir.org [mailto:air-l-bounces@listserv.aoir.org] On Behalf Of jeremy hunsinger Sent: May-10-11 10:51 AM To: Michael Zimmer Cc: air-l@listserv.aoir.org Subject: Re: [Air-L] a question about privacy protection and copyright in Internet research
Well what actually happens when you put something on facebook? it isn't like you are sending a private letter to a group of friends. it is much closer to going to a shopping mall where all the video cameras are tracking your every move. It isn't your property you are acting within... it is facebooks, in doing that acting you are agreeing with the terms that they put upon you. It isn't about your or my ethics Michael at that point, it isn't about what we should do or our ethical systems, it is then about the agreement that we consent to.
so i guess we should be clear here: we have nations, states and laws, that is one level of argument nation states and laws also have ethical review systems ethical review systems for research is another level of argument research ethics fit within those ethical review systems and are generally recognized by them though you may or your discipline may hold standards above and beyond those standards that you need to deal with my main issue here is to promote the construction that published documents are not a matter of human subjects, or if they are it is in very rare cases, so rare that they need not really even be considered by human subjects review, which currently they are exempt in the u.s.. I want to resist the academic temptation to turn every textual object into a representational ethical subject and say.. no.. this is just like a book, or this is jut like a newspaper, and in the rare cases when it is not, i want to be very explicit about why it is not. In terms of databases, I want to compare them to existing database practices in the social sciences and say this is just like x, and we have been treating x like this for z number of years years, if it is not like x, then say why. However, any time you say why it is not like x, you cannot in my mind be using an argument that they could have used in the past. In short, I'm trying to encourage and promote a rigorous approach to differentiation between subjects and non-subjects in research ethics on the internet, because in my mind, it is needed and we strongly need to resist the temptation to turn everything into a research subject. I am not trying to say that we do not need judgment, nor am I trying to argue that the traditions we have need updated, what I am saying is that we need rigorous clarity much more than not. We need to say this is a document, this is not a subject, and this is a subject and this is not a document, here are the categories where there is confusion. the two categories we seem to be confused about in this discussion are: privacy property/copyright my position on privacy is that a document is public and not private, and if you have private information in a document you should really investigate the nature of that private information, because it has been published and may not even be private anymore. and the latter category is not really my expertise, we have lawyers on the list that can tell you much more closely about it. But my suspicion is that most of the issues of privacy are confusions about who actually owns data or owns what rights to the data. and what that means. so to reiterate, I'm taking a strong line that tries to make clear the differences between document and subject, and I welcome arguments, but i also see it as a process, i admit that i am arguing a standpoint and occasionally i am also playing devil's advocate to force an issue or to force debate on an issue, and I'm happy to be wrong, so long as I am wrong and we have much more clarity.
I'm glad for the clarification, because now I know I disagree :). The cases where the published documents ("texts") actually are relevant to human subjects seem to be the area that is most interesting to me. And I suspect that there is not a single published document that does not require the researcher to be ethically reflexive in that regard. I suspect more people would agree with me that such ethical reflexivity was necessary if not for the practical implication of declaring that humans are involved (even if they may not be "subjects" in a casual sense or in the sense OHRP claims). In other words, I doubt Jeremy or anyone on this list is suggesting that with certain types of study, ethics no longer apply. The problem is much more practical, and that is that by suggesting that most or many published texts also involve human subjects, it is then necessary to take your study before a human subjects board. Although human subjects boards exist for very good reasons, they (in my experience) are often less familiar with the ethical issues surrounding an individual's research agenda than the individual is herself. Moreover, they tend to impede research that does not fit an existing structure. That acts as a significant brake on innovation in research, and means that a great deal of research does not get done. Let's take Twitter as an example. Although there are exceptions (since human subjects boards don't agree on the interpretation of particular studies, nor--often--on their charge), Twitter is general considered to be exempt from human subjects review. It is *so* exempt that most people who study Twitter do not go to IRBs to get an exemption. If a general understanding emerged that researchers examining Twitter required IRB approval, far less good research would be done on Twitter, and I think that would be a tragedy. (Or, more pointedly, I think that would do harm to the subjects the process was trying to protect, by robbing them of a deeper understanding of their social interactions.) Will one of these Twitter studies lead to harm? Yes, possibly. There are parallel examples of people studying open discussions that led to misinterpretation of the community (at least from the perspective of the community) and that is equally possible for Twitter. I've talked about my own ethical dilemma with a recent study of Twitter, and I expect that this isn't so rare an occurrence. Nonetheless, I emphatically would not have been able to do that study had it required IRB approval, both because of the time required to get it approved, and my own invested time to get it done. So, I think it's important to split the discussion between "are there ethical issues?" to which I can't imagine the answer ever being "no," and "should this be reviewed by an IRB?" to which I can imagine quite a number of "nos." Perhaps we need to think of alternatives. I would love to see journals requiring a section that discussed (a) whether the research had been reviewed by an IRB/human subjects board, (b) if so, a public disclosure of the proposal documents (along with the data), (c) if not, a discussion of the researchers' thoughts about risks and how they were mitigated. This to me would result in a much better outcome than turning things over wholesale to an IRB system that is frequently clunky at best. - Alex On Tue, May 10, 2011 at 12:18 PM, jeremy hunsinger <jhuns@vt.edu> wrote:
so i guess we should be clear here:
we have nations, states and laws, that is one level of argument
nation states and laws also have ethical review systems
ethical review systems for research is another level of argument
research ethics fit within those ethical review systems and are generally recognized by them
though you may or your discipline may hold standards above and beyond those standards that you need to deal with
my main issue here is to promote the construction that published documents are not a matter of human subjects, or if they are it is in very rare cases, so rare that they need not really even be considered by human subjects review, which currently they are exempt in the u.s.. I want to resist the academic temptation to turn every textual object into a representational ethical subject and say.. no.. this is just like a book, or this is jut like a newspaper, and in the rare cases when it is not, i want to be very explicit about why it is not. In terms of databases, I want to compare them to existing database practices in the social sciences and say this is just like x, and we have been treating x like this for z number of years years, if it is not like x, then say why. However, any time you say why it is not like x, you cannot in my mind be using an argument that they could have used in the past. In short, I'm trying to encourage and promote a rigorous approach to different iation between subjects and non-subjects in research ethics on the internet, because in my mind, it is needed and we strongly need to resist the temptation to turn everything into a research subject.
I am not trying to say that we do not need judgment, nor am I trying to argue that the traditions we have need updated, what I am saying is that we need rigorous clarity much more than not. We need to say this is a document, this is not a subject, and this is a subject and this is not a document, here are the categories where there is confusion.
the two categories we seem to be confused about in this discussion are:
privacy
property/copyright
my position on privacy is that a document is public and not private, and if you have private information in a document you should really investigate the nature of that private information, because it has been published and may not even be private anymore.
and the latter category is not really my expertise, we have lawyers on the list that can tell you much more closely about it. But my suspicion is that most of the issues of privacy are confusions about who actually owns data or owns what rights to the data. and what that means.
so to reiterate, I'm taking a strong line that tries to make clear the differences between document and subject, and I welcome arguments, but i also see it as a process, i admit that i am arguing a standpoint and occasionally i am also playing devil's advocate to force an issue or to force debate on an issue, and I'm happy to be wrong, so long as I am wrong and we have much more clarity.
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I tend to put reflexivity in the category of judgment. and no i am not saying this is going to be 'unethical' or that we shouldn't use ethics, what i am saying is that, we should resist the temptation to make public documents into questions of human subjects. But we just need to be as clear as we can in this area as to what the ethical considerations are. In regards to the twitter example and most 'harm' arguments I find it fruitful to discuss... where the harm began and who is perpetrating it in respect to what. I have a private twitter account and people have used it for research, in what sense is my twitter private, in what sense could i be harmed any more than I actually have consented to by using twitter? On May 10, 2011, at 12:37 PM, Alex Halavais wrote:
I'm glad for the clarification, because now I know I disagree :).
The cases where the published documents ("texts") actually are relevant to human subjects seem to be the area that is most interesting to me. And I suspect that there is not a single published document that does not require the researcher to be ethically reflexive in that regard.
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This discussion has been fascinating. I tend to side with Jeremy in this debate particularly his point of view regarding the analysis of texts as being viewed as different from the analysis of human subjects - though admittedly there are grey areas and this is my own opinion particularly in relation to my research of a blog posting and discussion. I guess my main concern in looking at the very interesting 'conversations' that have been occurring through AOIR in recent days - and it is great that AOIR listserv enables this to take place allowing a cross-fertilization of ideas - is that if extreme views are taken about privacy and ethics and copyright the possibility of conducting very valuable research is severely impeded which is sad from an academic perspective. The Internet is where so much is happening - we shouldn't ignore it and we may be worse off for the lack of it. The problem is finding the right balance ethically and legally and my impression is there is no "one size fits all" answer - almost every situation of research is potentially different. I'm not sure that I have any answers but it does raise the question of whether there can be any protection for Internet researchers that is supported by AOIR? Just my thoughts! Philippa Philippa Smith PhD Candidate Institute of Culture, Discourse & Communication AUT University Auckland NEW ZEALAND
jeremy hunsinger <jhuns@vt.edu> 5/11/2011 5:23 a.m. >>> I tend to put reflexivity in the category of judgment. and no i am not saying this is going to be 'unethical' or that we shouldn't use ethics, what i am saying is that, we should resist the temptation to make public documents into questions of human subjects. But we just need to be as clear as we can in this area as to what the ethical considerations are.
In regards to the twitter example and most 'harm' arguments I find it fruitful to discuss... where the harm began and who is perpetrating it in respect to what. I have a private twitter account and people have used it for research, in what sense is my twitter private, in what sense could i be harmed any more than I actually have consented to by using twitter? On May 10, 2011, at 12:37 PM, Alex Halavais wrote:
I'm glad for the clarification, because now I know I disagree :).
The cases where the published documents ("texts") actually are relevant to human subjects seem to be the area that is most interesting to me. And I suspect that there is not a single published document that does not require the researcher to be ethically reflexive in that regard.
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Like Alex, I now have a better understanding the how/why you're trying to make this strong distinction between "documents" and "human subjects". But my broader concern is that some of the statements made seem to indicate that even if we decide a particular item under study is not a "human subject", then we don't need to consider any possible impact on the human connected to that document. To me, research ethics reaches beyond strict "human subject" distinctions or whether a project is strictly under the purview of an IRB. Things brings me back to my earlier concern with Jeremy's apparent assertion that once something is published, it is no longer private, and thus we needn't worry ourselves with privacy/ethical concerns. And I'm reading his meaning to include cases where that publication is without the explicit knowledge or consent of the subject. Please correct me if I'm mistaken here, Jeremy, because it then begs the question about how the publication of illegally obtained data would fit into your framework. If Anonymous publishes personal data from the Sony PlayStation database breech, can we researchers use that data without concern over subject privacy? Are you suggesting that users took the risk that Sony might have flawed security, and users automatically lost any interest in the data once they submitted it to the 3rd party? -mz On May 10, 2011, at 12:23 PM, jeremy hunsinger wrote:
I tend to put reflexivity in the category of judgment. and no i am not saying this is going to be 'unethical' or that we shouldn't use ethics, what i am saying is that, we should resist the temptation to make public documents into questions of human subjects. But we just need to be as clear as we can in this area as to what the ethical considerations are.
In regards to the twitter example and most 'harm' arguments I find it fruitful to discuss... where the harm began and who is perpetrating it in respect to what. I have a private twitter account and people have used it for research, in what sense is my twitter private, in what sense could i be harmed any more than I actually have consented to by using twitter?
On May 10, 2011, at 12:37 PM, Alex Halavais wrote:
I'm glad for the clarification, because now I know I disagree :).
The cases where the published documents ("texts") actually are relevant to human subjects seem to be the area that is most interesting to me. And I suspect that there is not a single published document that does not require the researcher to be ethically reflexive in that regard.
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On May 10, 2011, at 5:52 PM, Michael Zimmer wrote:
Like Alex, I now have a better understanding the how/why you're trying to make this strong distinction between "documents" and "human subjects". But my broader concern is that some of the statements made seem to indicate that even if we decide a particular item under study is not a "human subject", then we don't need to consider any possible impact on the human connected to that document.
there is a perfectly extensive ethics of things, but I'm not certain how much we really need to say... worry about a research ethics where one is researching say.. toasters connecting to the internet. It isn't that there aren't ethical implications it is just that the questions of either Harm or Autonomy associated with questions of researching something are mitigated to an extent to make them mostly moot, but that does not mean they should not be 'cared' for in our judgment or reflexivity, it is just that we should not believe that the 1 in say 10000 possibility that this will have any harm at all... is really to be the center of our focus.
To me, research ethics reaches beyond strict "human subject" distinctions or whether a project is strictly under the purview of an IRB.
Ethics can extend all over the place according to personal preference, but I should think that research ethics are a bit beyond that, and then the question becomes, as an association, should we be promoting a minoritarian perspective which could in the future come back to really impinge our ability to do research.
Things brings me back to my earlier concern with Jeremy's apparent assertion that once something is published, it is no longer private, and thus we needn't worry ourselves with privacy/ethical concerns. And I'm reading his meaning to include cases where that publication is without the explicit knowledge or consent of the subject. Please correct me if I'm mistaken here, Jeremy, because it then begs the question about how the publication of illegally obtained data would fit into your framework.
as i sort of indicated, i wasn't interested so much in the legal/illegal bit, because i don't think it really is a central question. Have you ever seen illegally obtained data? I don't think i've ever seen it and I look. I have seen unethically obtained data, and it is now in a book that is expected to be a best seller.
If Anonymous publishes personal data from the Sony PlayStation database breech, can we researchers use that data without concern over subject privacy?
I don't think you can legally contract with Anonymous that would guarantee anything... would you use that data? I don't know any researcher that would use it if they couldn't really know they had rights to use it by its owners But for instance, if Bethesda Gameworks gave you data including all information about users of their game, all kinds of data that was given to them, even if the company promised to keep the data for some purpose, and not distribute it, i do not think anyone would have any problem with using that data if it was legally contracted from that company. Is it unethical to use illegally provided data? I think that would depend, I can imagine a situation where it might be viewed as heroic and worldchanging in an and entirely ethical way to use such data. Have I seen people use that data in such a way? no. So am I worried about that problem, No. Do i think we should be telling people what data they can use that might be illegally obtained? no. Let the lawyers do that.
Are you suggesting that users took the risk that Sony might have flawed security, and users automatically lost any interest in the data once they submitted it to the 3rd party?
That very well can be the case too whether the data is legally or illegally obtained. Some people give up their rights to their data through a contract. We might be against the giving up those rights, but I do not think we are unethical if we get that data legitimately and possibly if we don't. I do not think the ethics of this problem lies with the ethical researcher as much as it lies with the problem of information literacy and other issues. This I see as one of the problems of researching myspace or facebook where in the U.S. many of the users do not even have the capacity to consent in this country, as such if you are given data or even just use api access to view that data... what are you doing? isn't that unethical, don't you need irb approval to view the website? I will say... no, even with protected classes unable to consent, viewing the data isn't a problem for research ethics. The abstracted representation of data is not working with human subjects in and ethical manner in this case, it is just interacting with a set of documents that form a website. Jeremy Hunsinger Center for Digital Discourse and Culture Virginia Tech Computers are useless. They can only give you answers. --Pablo Picasso
All, I have found IRBs (writ large) are more concerned about liability than research ethics per se. For that matter, the response of an IRB concerning a research project will vary between institutions. There is dealing with the IRB rules (with their legal/institutional imperatives) and then there is maintaining a ethical center in your own research. As a researcher I pledge to do no harm and protect participants - as a qualitative researcher I am not to fond of the term subject - as much as I am able. I would like to qualify myself on the research ethics front to say I pulled an article out or a revise and resubmit process because, as the state security situation changed in 2001, I felt it might endanger the people I was writing about and that there was no way I could adequately mask their individual and, more important, collective identity. To me, that is the level that research ethics should operate on, my judgment as a trained professional, not what I can get by my IRB. Moreover, the idea that you can protect a research participant from harm or even promise anonymity with any certainty is a fiction even before electronic databases and the internet. Now with databases and search at its current capabilities the promise of anonymity is even more tenuous. This is further complicated by the fact the rest of world is not operating on a similar set of rules. That is how we get IRBs rejecting research on Usenet data that Microsoft has gathered and is available online to anyone. IMO it comes down to a reasonable expectation of privacy. If you are in a public space, say protesting, such as a street or square and I want to observe you and the crowd in that space I do not need consent because there is no expectation of privacy. If I go up and talk to you, that is a different matter. This I believe this is what we are talking about in regards to places we can get to online with *no access restrictions*. Do I still have an ethical obligation to "do no harm" and try and protect people? Of course. Again, IMO, interaction and the reasonable expectation of privacy are key. My worry has always been as we cycle through these ethics conversations is that we are constraining ourselves into irrelevancy when we worry more about consent in these open online places and to the point where any meaningful research is impossible. I do not think it is an exaggeration to equate a blog, video, or Usenet conversation that anyone can see online to a book, interview on the radio, or TV program. For the latter, and I argue the former as well, consent is neither reasonable nor practical. I do not think anyone here is arguing that texts do not represent or reflect people or that we do not need to be concerned about the people attached to these artifacts (digital or otherwise) and the potential impact of our research on them. It seemed to me that Jeremy and others are simply stating that texts/artifacts are not "people" in and of themselves. They are objects not subjects. And if we decide that everything created that represents a person is a person (digital or otherwise) we not only strangle our ability to do beneficial and meaningful research, we reduce the value of the flesh and blood people behind these artifacts. -TED On Tue, May 10, 2011 at 3:16 PM, jeremy hunsinger <jhuns@vt.edu> wrote:
On May 10, 2011, at 5:52 PM, Michael Zimmer wrote:
Like Alex, I now have a better understanding the how/why you're trying to make this strong distinction between "documents" and "human subjects". But my broader concern is that some of the statements made seem to indicate that even if we decide a particular item under study is not a "human subject", then we don't need to consider any possible impact on the human connected to that document.
there is a perfectly extensive ethics of things, but I'm not certain how much we really need to say... worry about a research ethics where one is researching say.. toasters connecting to the internet. It isn't that there aren't ethical implications it is just that the questions of either Harm or Autonomy associated with questions of researching something are mitigated to an extent to make them mostly moot, but that does not mean they should not be 'cared' for in our judgment or reflexivity, it is just that we should not believe that the 1 in say 10000 possibility that this will have any harm at all... is really to be the center of our focus.
To me, research ethics reaches beyond strict "human subject" distinctions
or whether a project is strictly under the purview of an IRB.
Ethics can extend all over the place according to personal preference, but I should think that research ethics are a bit beyond that, and then the question becomes, as an association, should we be promoting a minoritarian perspective which could in the future come back to really impinge our ability to do research.
Things brings me back to my earlier concern with Jeremy's apparent
assertion that once something is published, it is no longer private, and thus we needn't worry ourselves with privacy/ethical concerns. And I'm reading his meaning to include cases where that publication is without the explicit knowledge or consent of the subject. Please correct me if I'm mistaken here, Jeremy, because it then begs the question about how the publication of illegally obtained data would fit into your framework.
as i sort of indicated, i wasn't interested so much in the legal/illegal bit, because i don't think it really is a central question. Have you ever seen illegally obtained data? I don't think i've ever seen it and I look. I have seen unethically obtained data, and it is now in a book that is expected to be a best seller.
If Anonymous publishes personal data from the Sony PlayStation database breech, can we researchers use that data without concern over subject privacy?
I don't think you can legally contract with Anonymous that would guarantee anything... would you use that data? I don't know any researcher that would use it if they couldn't really know they had rights to use it by its owners But for instance, if Bethesda Gameworks gave you data including all information about users of their game, all kinds of data that was given to them, even if the company promised to keep the data for some purpose, and not distribute it, i do not think anyone would have any problem with using that data if it was legally contracted from that company.
Is it unethical to use illegally provided data? I think that would depend, I can imagine a situation where it might be viewed as heroic and worldchanging in an and entirely ethical way to use such data. Have I seen people use that data in such a way? no. So am I worried about that problem, No. Do i think we should be telling people what data they can use that might be illegally obtained? no. Let the lawyers do that.
Are you suggesting that users took the risk that Sony might have flawed security, and users automatically lost any interest in the data once they submitted it to the 3rd party?
That very well can be the case too whether the data is legally or illegally obtained. Some people give up their rights to their data through a contract. We might be against the giving up those rights, but I do not think we are unethical if we get that data legitimately and possibly if we don't. I do not think the ethics of this problem lies with the ethical researcher as much as it lies with the problem of information literacy and other issues. This I see as one of the problems of researching myspace or facebook where in the U.S. many of the users do not even have the capacity to consent in this country, as such if you are given data or even just use api access to view that data... what are you doing? isn't that unethical, don't you need irb approval to view the website? I will say... no, even with protected classes unable to consent, viewing the data isn't a problem for research ethics. The abstracted representation of data is not working with human subjects in a nd ethical manner in this case, it is just interacting with a set of documents that form a website.
Jeremy Hunsinger Center for Digital Discourse and Culture Virginia Tech
Computers are useless. They can only give you answers. --Pablo Picasso
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I see what Jeremy is trying to achieve with his hard line devil's advocate position, mainly because I've heard him mount this argument more than once before :) Certainly I think we have a shared goal - for the love of god let's not contribute to the domain creep of the worst aspects of IRBs by simply seeing "human research subjects" everywhere there are texts and utterances. However, as Alex says, IRB exemption or approval will never come close to the kinds of ethical considerations that actually come up in much research (eg on Twitter), and researchers must and do engage in a great deal of reflexivity around these issues as they go about their work. I think Alex hits the nail on the head here with his call for a pragmatic reflexive approach and the idea of encouraging openness about that reflexivity within the context of disciplinary norms and expectations. A lot of this is done within research teams at the moment I suppose. Jean On 11/05/2011, at 2:39, "Alex Halavais" <alex@halavais.net> wrote:
I'm glad for the clarification, because now I know I disagree :).
The cases where the published documents ("texts") actually are relevant to human subjects seem to be the area that is most interesting to me. And I suspect that there is not a single published document that does not require the researcher to be ethically reflexive in that regard.
I suspect more people would agree with me that such ethical reflexivity was necessary if not for the practical implication of declaring that humans are involved (even if they may not be "subjects" in a casual sense or in the sense OHRP claims). In other words, I doubt Jeremy or anyone on this list is suggesting that with certain types of study, ethics no longer apply.
The problem is much more practical, and that is that by suggesting that most or many published texts also involve human subjects, it is then necessary to take your study before a human subjects board. Although human subjects boards exist for very good reasons, they (in my experience) are often less familiar with the ethical issues surrounding an individual's research agenda than the individual is herself. Moreover, they tend to impede research that does not fit an existing structure. That acts as a significant brake on innovation in research, and means that a great deal of research does not get done.
Let's take Twitter as an example. Although there are exceptions (since human subjects boards don't agree on the interpretation of particular studies, nor--often--on their charge), Twitter is general considered to be exempt from human subjects review. It is *so* exempt that most people who study Twitter do not go to IRBs to get an exemption. If a general understanding emerged that researchers examining Twitter required IRB approval, far less good research would be done on Twitter, and I think that would be a tragedy. (Or, more pointedly, I think that would do harm to the subjects the process was trying to protect, by robbing them of a deeper understanding of their social interactions.)
Will one of these Twitter studies lead to harm? Yes, possibly. There are parallel examples of people studying open discussions that led to misinterpretation of the community (at least from the perspective of the community) and that is equally possible for Twitter. I've talked about my own ethical dilemma with a recent study of Twitter, and I expect that this isn't so rare an occurrence. Nonetheless, I emphatically would not have been able to do that study had it required IRB approval, both because of the time required to get it approved, and my own invested time to get it done.
So, I think it's important to split the discussion between "are there ethical issues?" to which I can't imagine the answer ever being "no," and "should this be reviewed by an IRB?" to which I can imagine quite a number of "nos."
Perhaps we need to think of alternatives. I would love to see journals requiring a section that discussed (a) whether the research had been reviewed by an IRB/human subjects board, (b) if so, a public disclosure of the proposal documents (along with the data), (c) if not, a discussion of the researchers' thoughts about risks and how they were mitigated. This to me would result in a much better outcome than turning things over wholesale to an IRB system that is frequently clunky at best.
- Alex
On Tue, May 10, 2011 at 12:18 PM, jeremy hunsinger <jhuns@vt.edu> wrote:
so i guess we should be clear here:
we have nations, states and laws, that is one level of argument
nation states and laws also have ethical review systems
ethical review systems for research is another level of argument
research ethics fit within those ethical review systems and are generally recognized by them
though you may or your discipline may hold standards above and beyond those standards that you need to deal with
my main issue here is to promote the construction that published documents are not a matter of human subjects, or if they are it is in very rare cases, so rare that they need not really even be considered by human subjects review, which currently they are exempt in the u.s.. I want to resist the academic temptation to turn every textual object into a representational ethical subject and say.. no.. this is just like a book, or this is jut like a newspaper, and in the rare cases when it is not, i want to be very explicit about why it is not. In terms of databases, I want to compare them to existing database practices in the social sciences and say this is just like x, and we have been treating x like this for z number of years years, if it is not like x, then say why. However, any time you say why it is not like x, you cannot in my mind be using an argument that they could have used in the past. In short, I'm trying to encourage and promote a rigorous approach to different iation between subjects and non-subjects in research ethics on the internet, because in my mind, it is needed and we strongly need to resist the temptation to turn everything into a research subject.
I am not trying to say that we do not need judgment, nor am I trying to argue that the traditions we have need updated, what I am saying is that we need rigorous clarity much more than not. We need to say this is a document, this is not a subject, and this is a subject and this is not a document, here are the categories where there is confusion.
the two categories we seem to be confused about in this discussion are:
privacy
property/copyright
my position on privacy is that a document is public and not private, and if you have private information in a document you should really investigate the nature of that private information, because it has been published and may not even be private anymore.
and the latter category is not really my expertise, we have lawyers on the list that can tell you much more closely about it. But my suspicion is that most of the issues of privacy are confusions about who actually owns data or owns what rights to the data. and what that means.
so to reiterate, I'm taking a strong line that tries to make clear the differences between document and subject, and I welcome arguments, but i also see it as a process, i admit that i am arguing a standpoint and occasionally i am also playing devil's advocate to force an issue or to force debate on an issue, and I'm happy to be wrong, so long as I am wrong and we have much more clarity.
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participants (7)
-
Alex Halavais -
Jean Burgess -
jeremy hunsinger -
Michael Zimmer -
Peter Timusk -
Philippa Smith -
Ted Coopman