Most recent edit on 2005-05-30 11:25:29 by pcp05305053pcs.wanarb01.mi.comcast.net
Additions:
These two comments seem to be in direct conflict: we all recognize the need to protect privacy, but the same protection we want to offer makes it difficult to conduct research in an anonymous setting like ecommunities can offer. If lurking can be seen as harmful by the group and announcing our presence can cause members to self-censor or withdraw, we've lost much of the potential research value of these sites.
I thought that this article raised several pertinent points with regards to ethical considerations when studying online communities. For me, the crux of the problem lies in being able to determine what constitues a public or private communication, using common sense and approaching the community to be studied with sensitivity. Like Cathy, that much can be gained from being more informed and judicious about our involvement and study of online communities. I have actually been thinking about this as it pertains directly to my study of whether the use of blogs can positively impact learning.
Another issue with privacy and ownership that pertains to all online communities is the issue of trust (as raised above). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
Deletions:
EverettWiggins
These two comments seem to be indirect conflict: we all recognize the need to protect privacy, but the same protection we want to offer makes it difficult to conduct research in an anonymous setting like ecommunities can offer. If lurking can be seen as harmful by the group and announcing our presence can cause members to self-censor or withdraw, we've lost much of the potential research value of these sites.
I thought that this article raised several pertinent points with regards to ethical considerations when studying online communities. For me, the crux of the problem lies in being able to determine what constitues a public or private communication, using common sense and approaching the community to be studied with sensitivity. Like Everett and Cathy, that much can be gained from being more informed and judicious about our involvement and study of online communities. I have actually been thinking about this as it pertains directly to my study of whether the use of blogs can positively impact learning.
Another issue with privacy and ownership that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
MariaCervone
Edited on 2005-01-18 14:28:41 by CaRichardson
Additions:
(PaulResnick: you lost me on this one. Can anyone else jump in and help me see the connection between rent dissipation and ethical concerns about studying an online community?)
CaRichardson
It is interesting to me that the above discussion centers around the deciding about public/private space, deciding what is ethical etc. At least in the IRB I have to deal with every day, it is not the researcher's decision, it is the IRB's decision. For example, if we are doing an analysis on a publicly available de-identified dataset, we still have to explain our study, fill out an IRB application (some IRB's have shorter request for waiver forms) and request either IRB approval or a waiver (i.e. the IRB makes the decision about whether or not IRB approval is needed). None of the ethnographic e-community studies that have been discussed would qualify for waiver but some might qualify for exemption from written informed consent. Many medical journals are not accepting any original research articles on any type of research or topic that do not have evidence of IRB review with either waiver or approval. The simple act of disclosing your research plan and any potential risks and benefits goes a long way toward insuring that you are conducting ethical research. Eventually, I think it will be reframed to the point that ethical research is research that has been vetted through the IRB process. There are no objective standards of ethical research conduct. The IRB process is a rapidly evolving process and it is highly dependent on who is on the review panel. Much of what was published in this article in 2001 is no longer accurate. Retrospective chart reviews are rarely approved by the UMich medical IRB without written informed consent. What was ok last year is not acceptable this year. It is not uncommon for experts on the ethical conduct of research to look back on previously conducted research with horror. With rapidly changing rules and norms, I think the only way to insure that you are being ethical is to have an IRB committee review your proposal and get approval.
One of the hard questions in a lot of the ethnographic research described above is "what is the benefit?". If the researcher can describe a clear benefit to society, often the problems of informed consent can be solved. Unfortunately, for basic as opposed to applied social-science research, the societal benefit is often unclear or at least remote. I have very little trouble getting informed consent from sick individuals who think I am working on improving their health care. In a recent study conducted at the VA, veterans were asked questions about privacy / human subjects protection and HIPPA rules in focus groups. Most felt the rules were absurd and many expressed concern that these rules were so difficult that they were actually causing them harm by restricting research that might eventually help them.
I am currently in the process of getting University of Michigan Medical IRB approval for one ethnographic study (in patients with serious mental illness, a particularly vulnerable group) and for one randomized-controlled trial of a web-based application to promote walking in people with diabetes (a high-risk group). For both of these studies, despite employing extreme measures to protect patient safety and privacy, I got back 20 to 30 requested changes from the IRB committee. Additionally, I have a multi-center randomized controlled trial in a high risk veterans population for which I have to get approval from 7 different IRB's across the country, each with different forms, rules and standards. I even have to get IRB approval to develop (not test, just build) a web-based physical activity intervention, a process that will not involve any human subjects at all. Despite the fact that this research clearly is outside of the scope of IRB review according to federal law, NIH will not give me the grant money that they already awarded to me until the IRB has reviewed the research plan. I personally fund and employ two full time research assistants who are currently working almost exclusively on IRB applications. The burden on the IRB committee to review every research project conducted by every faculty member, fellow, grad student etc at the University of Michigan is enormous. As a society, we pay a very high cost to insure the ethical conduct or research.
Deletions:
(PaulResnick: you lost me on this one. Can anyone else jump in and help me see the connection between rent dissipation and ethical concerns about studying an online community?)
Edited on 2005-01-17 22:52:21 by PaulResnick
Additions:
PaulResnick: And in some cases there may not be any ethical way to conduct research on an on-line community. In that case, you should pick a different community.
One of the problems with blogs is that they are definitely personal spaces, yet the audience for the content can be infinitely huge. Diane Schiano et al's (2004) ethnographic study of blogging as a form of personal journal and communication revealed that most bloggers were aware that the general public has access to their posts, however the primary audience for keeping a blog tends to be for oneself and, perhaps, a small circle of regular readers. Additionally, high profile blogs which cover political events and opinions, tend to blur the boundary between the personal and the public as well. This makes the job of the researcher very difficult. Where is the line drawn? Are blogs totally off-limits in terms of ethical issues? I don't think that the IRB has thought very much about this issue yet.
(PaulResnick: they are certainly not off-limits; the same principles apply to them as to any other on-line research.)
Another issue with privacy and ownership that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
BenjaminChiao
(PaulResnick: you lost me on this one. Can anyone else jump in and help me see the connection between rent dissipation and ethical concerns about studying an online community?)
Deletions:
One of the problems with blogs is that they are definitely personal spaces, yet the audience for the content can be infinitely huge. Diane Schiano et al's (2004) ethnographic study of blogging as a form of personal journal and communication revealed that most bloggers were aware that the general public has access to their posts, however the primary audience for keeping a blog tends to be for oneself and, perhaps, a small circle of regular readers. Additionally, high profile blogs which cover political events and opinions, tend to blur the boundary between the personal and the public as well. This makes the job of the researcher very difficult. Where is the line drawn? Are blogs totally off-limits in terms of ethical issues? I don't think that the IRB has thought very much about this issue yet.
Another issue with privacy and ownership is that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended for, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
BenjaminChiao
Edited on 2005-01-17 18:56:05 by BenjaminChiao
Additions:
BenjaminChiao
Ethical concerns can be explained by economic theories. Ethical concerns are a form of human rights. I hope these paragraphs would offer some framework for us to start thinking about what are the features of online communities that affect the ethical concerns as they are now. I defer to future (or others’) discussions on such features.
Cheung (1982) is the first one to offer an economic explanation about why human rights are not respected during the early communist rule in China. Cheung argues that not only are resources not directed to the most productive means, other forms of right systems such as ranking, corruption, and backdoor policies are formed to reduce rent dissipation. Rent is defined as the portion of income that can be derived from a resource in which a change in rent does not affect the allocation of the resource. Rent dissipation occurs when people fight over resource in the public domain. Barzel (1997) writes that a commodity is in the public domain if the resources used to acquire it accrue to no one. For instance, if there is a price ceiling on gasoline prices, there will be long lines waiting to fill gas and the waiting time is the rent dissipated. Note that the difference between the controlled price and the willingness to pay is the maximum rent that lies in the public domain.
Since communism is but the abolition of private property (Marx and Engels, 1848), the prices of many commodities are fixed and in fact are allocated without market signals. The complete dissipation of rent and thus the extinction of an economic system is inevitable without the aforementioned substitutes of right systems. The corollary is that human right is superseded by the ranking system in a sense that not every one is equal under the law.
Barzel, Yoram. Economic Analysis of Property Rights. Cambridge: Cambridge University Press, 1997.
Cheung, Steven N. S. Will China Go ‘Capitalist’: An Economic Analysis of Property Rights and Institutional Change. London: The Institute of Economic Affairs. Harper Paper, 1982.
Marx, Karl, and Engels, Friedrich. Manifest der Kommunistischen Partei, 1848. [English translation: “The Manifesto of the Communist Party.” In Marx: The Revolutions of 1848. Harmondsworth: Penguin Books, 1973.]
Edited on 2005-01-17 17:17:34 by LaurieBuis
Additions:
Laurie Buis
The more I considered this issue over the weekend, the less clear cut everything seemed to be... This is truly an issue that must be considered on a case by case basis. There are so many facets to consider that I doubt any type of algorithm could be devised that would give you a cut and dry answer as to whether researchers should identify themselves in an online community. This is truly one to ponder.
Edited on 2005-01-17 17:14:46 by MariaCervone
Additions:
Another issue with privacy and ownership is that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended for, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
MariaCervone
This article raises more questions than it answers. While it does crystalize some of the issues, it left me wishing they had taken a stand. I was not surprised that some community participants took offense at researchers’ “intrusions” on their community. This raises interesting questions about how a community is defined (ie, do community members perceive that researchers are not valid members of the community?). An analog to the researcher as lurker exists in the physical world of professional organizations: Headhunters and vendors sign up with professional organizations to get an easy list of all the key contacts in order to drum up business. Some professionals are severely annoyed by this while others see it as a necessary distraction, because there will be a day they benefit from the headhunter or vendor call. In this setting, the community is defined to include the headhunters and vendors, who are marginally tolerated by the professionals who are the core of the community. I wonder whether the researcher-as-intruder opinion is widely held within communities, and also if there is anything researchers can do to help communities understand how they will benefit from the research. Even so, the ethical issues are thorny here and it seems to me that better guidance and consensus is needed so that researchers can ensure they are behaving ethically according to current social norms.
The public/private space issue is intriguing: perhaps it’s clear that a site is public if there is no login required. What, though, is implied by a login? If anyone is allowed to register without fulfilling criteria that defines them as a member of the community, then how private is the space really since potentially anyone can join? What happens if the information on the forum is public but login is required to post comments? Is that a public or a private space? Will the participants be sufficiently aware it is a public forum even though they are logging in? The only scenario I see that is unambiguously private is where registration is required and you must meet certain criteria to join.
Deletions:
Another issue with privacy and ownership is that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended for, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
Edited on 2005-01-17 16:47:22 by JudeYew
Additions:
JudeYew
I thought that this article raised several pertinent points with regards to ethical considerations when studying online communities. For me, the crux of the problem lies in being able to determine what constitues a public or private communication, using common sense and approaching the community to be studied with sensitivity. Like Everett and Cathy, that much can be gained from being more informed and judicious about our involvement and study of online communities. I have actually been thinking about this as it pertains directly to my study of whether the use of blogs can positively impact learning.
One of the problems with blogs is that they are definitely personal spaces, yet the audience for the content can be infinitely huge. Diane Schiano et al's (2004) ethnographic study of blogging as a form of personal journal and communication revealed that most bloggers were aware that the general public has access to their posts, however the primary audience for keeping a blog tends to be for oneself and, perhaps, a small circle of regular readers. Additionally, high profile blogs which cover political events and opinions, tend to blur the boundary between the personal and the public as well. This makes the job of the researcher very difficult. Where is the line drawn? Are blogs totally off-limits in terms of ethical issues? I don't think that the IRB has thought very much about this issue yet.
Another issue with privacy and ownership is that pertains to all online communities is the issue of trust (as raised by Everett). If individuals were too cautious with their privacy, then open community models such as wikipedia would not work. On the other hand, if one's contributions were likely to be used in ways other than which they were originally intended for, then individuals within the community would be unwilling to contribute. I think that the issue of trust is crucial to design and development of online communities. Without trust, one would be unlikely to contribute to a 'common' space.
Deletions:
Edited on 2005-01-17 13:03:30 by EverettWiggins
Additions:
My point of view is that qualitative research requires researchers put forth time and effort to understand the community of study, and handle ethical issues with a strong sense of responsibility and delicacy. The benefit/protection of study subjects comes first regardless of means to take.
EverettWiggins
There is increasing evidence that researchers posting or “lurking” on such communities may be perceived as intruders and may damage the communities.
Eysenbach-Till, p. 1103
Informed consent, privacy, and confidentiality are basic ethical tenets of scientific research on people. To determine whether informed consent is required, you
first have to decide whether postings on an internet community are “private” or “public” communications.
ibid, p. 1104
These two comments seem to be indirect conflict: we all recognize the need to protect privacy, but the same protection we want to offer makes it difficult to conduct research in an anonymous setting like ecommunities can offer. If lurking can be seen as harmful by the group and announcing our presence can cause members to self-censor or withdraw, we've lost much of the potential research value of these sites.
I think that we, as researchers, must exercise some degree of judgment about how best to interact with our groups. This may depend upon not only the type of group, but also the type of research. For some groups, like my alumni group, it will be appropriate to announce presence and intent upfront: I am known, and trusted, in the group—and the subject is of interest to many. In other circumstances, other approaches may be better.
Deletions:
My point of view is that qualitative research requires researchers put forth time and effort to understand the community of study, and handle ethical issues with a strong sense of responsibility and delicacy. The benefit/protection of study subjects comes first regardless of means to take.
Edited on 2005-01-17 11:02:34 by bgp996500bgs.nanarb01.mi.comcast.net
Additions:
CathyLu:
I think Paul has a point here -- disclosing your presense could be more damaging to the community than quietly lurking for research purposes at times. This all depends on whether the community you study is found more towards the private side or more towards the public side on the scale. As summarized in the Eysenbach and Till's article, "the main problem with using internet communities for research is that researchers may have difficulty separating spaces regarded as private from spaces regarded as public". To make things even more complex, "on the Internet the dichotomy of private and public sometimes may not be appropriate, and communities may lie in between".
Deletions:
CathyLu: I think Paul has a point here -- disclosing your presense could be more damaging to the community than quietly lurking for research purposes at times. This all depends on whether the community you study is found more towards the private side or more towards the public side on the scale. As summarized in the Eysenbach and Till's article, "the main problem with using internet communities for research is that researchers may have difficulty separating spaces regarded as private from spaces regarded as public". To make things even more complex, "on the Internet the dichotomy of private and public sometimes may not be appropriate, and communities may lie in between".
Edited on 2005-01-17 11:01:45 by bgp996500bgs.nanarb01.mi.comcast.net
Additions:
CathyLu: I think Paul has a point here -- disclosing your presense could be more damaging to the community than quietly lurking for research purposes at times. This all depends on whether the community you study is found more towards the private side or more towards the public side on the scale. As summarized in the Eysenbach and Till's article, "the main problem with using internet communities for research is that researchers may have difficulty separating spaces regarded as private from spaces regarded as public". To make things even more complex, "on the Internet the dichotomy of private and public sometimes may not be appropriate, and communities may lie in between".
Most qualitative researchers would agree that informed consent is necessary to the "private room" type of online communities, but since there is no such clear boundary between "public" and private" space among these communities, I personally consider that joining a community as an observer could be an initial way of identifying the characteristics of the studied community. After a period of time of observing, the researcher should be able to make a judgement of what to take in the next step based on professional ethical tenets. Whether to disclose your identity could also depend on what type of data you would be extracting from your observation (if it relates privacy or not) and if it exposes any quoted person's identify to the public. In case of risk of privacy and confidentiality, disclosing the researcher's identity and asking for informed consent is required for the researcher to carry on the study with the community and successfully building a trusting relationship with individual subjects. In case of risk of intruding the community or damaging its dynamics by disclosing the researcher's identity, I wonder, if this is a point that the researcher should evaluate the possibility of researching in this community without ever causing damage to it, or that further effort needs to be spent in building more trust and understanding between the researcher and other community members.
My point of view is that qualitative research requires researchers put forth time and effort to understand the community of study, and handle ethical issues with a strong sense of responsibility and delicacy. The benefit/protection of study subjects comes first regardless of means to take.
Deletions:
<Your Wiki Name here>
Edited on 2005-01-17 07:51:30 by PaulResnick
Additions:
PaulResnick: The paper points out the problem of "who" you need to get informed consent from, when you are observing a community rather than an individual. He argues that the "list owner" is insufficient, and that even if you get prospective approval from the people in a community at some point in time, others may join later.
PaulResnick: I agree that actions which harm an existing community's interaction patterns, or force people to drop out if they don't like the researcher's presence, are not an ethical approach. I don't think Eysenbach was really suggesting that; it was more of a straw man, to point out the problem, in this context, with the usual approach of informed consent and allowing individuals to opt out.
PaulResnick: I'm not sure what you mean about adding and taking away identity. Can you clarify?
The one thing missing from the concluding statements by Eysenbach and Till: disclosure. In my first marketing course ever, I gathered that disclosure of what the research is about and what it will be used for is a definite ethical consideration in qualitative research. Perhaps this is implied here, but it seems an important enough topic that it should have been included.
PaulResnick: Good, but what if disclosing your presence is harmful to the community, while quiet lurking would not be?
Deletions:
The one thing missing from the concluding statements by Eysenbach and Till: disclosure. In my first marketing course ever, I gathered that disclosure of what the research is about and what it will be used for is a definite ethical consideration in qualitative research. Perhaps this is implied here, but it seems an important enough topic that it should have been included.
Edited on 2005-01-15 15:59:25 by AlliWalk
Additions:
LaurieBuis
The conflict between community participant privacy and research is one that I find particularly troubling, especially in the context of health.
Millions of people in our country live in rural areas where access to support groups is minimal, especially if one is suffering from a rare disease. Online support groups provide people in rural areas, as well as people with rare diseases, access to medical and social support that they otherwise would not receive. By studing online health communities, we can learn how to more effectively support people who are solely supported through computer mediated means.
BUT, Eysenbach points out nicely that participants in a community are not always keen on the idea of being studied. People value their privacy and by having a researcher (who intends to publish) lurk on the sidelines of a community, some people feel that their privacy will be compromised. While there is not a large expectation of privacy on the Internet, people in online support groups tend to be discussing sensitive topics. They may be turning to these online support groups because it is their ONLY alternative. They may be aware that the level of privacy is low, but if this is there only outlet for support, they have no choice but to accept this fact.
I feel that while we are able to unobtrusively collect data from online communities, it is our duty as researchers to shield our participants privacy to the fullest extent by disclosing our presence. I feel that it is my responsibility to inform community members of my presence in a community immediately upon joining and to explain my intent. If I were to be involved with research that allows me to analyze the content of a community without making my presence known, I feel that it is my responsibility to continue to protect the privacy of the members by only looking at data in the aggregate and never quoting members directly or even naming them, even if they use a pseudonym. While we as researchers have a duty to investigate different phenomena, our number one priority should be to protect the integrity of our participants, either willing or not.
Edited on 2005-01-15 15:44:45 by dhcp2-226.si.umich.edu
Additions:
EysenbachTill 2001 : Eysenbach, G. and Till, J. E. (2001) “Ethical issues in qualitative research on internet communities.” BMJ, 323, 1103-1105. [available online∞]
Deletions:
EysenbachTill 2001 : Eysenbach, G. and Till, J. E. (2001) “Ethical issues in qualitative research on internet communities.” BMJ, 323, 1103-1105. [available online∞]
Edited on 2005-01-15 15:43:44 by dhcp2-226.si.umich.edu
Additions:
EysenbachTill 2001 : Eysenbach, G. and Till, J. E. (2001) “Ethical issues in qualitative research on internet communities.” BMJ, 323, 1103-1105. [available online∞]
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EysenbachTill 2001
Edited on 2005-01-15 15:42:25 by dhcp2-226.si.umich.edu
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EysenbachTill 2001
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Eysenbach2001
Edited on 2005-01-14 23:08:02 by AlliWalk
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<Your Wiki Name here>
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<YourWikiName here>
Edited on 2005-01-14 23:07:42 by AlliWalk
Additions:
In last semester's, Technology, Emerging Law, and Applied Policy course, we discussed the permeating qualities of digital information and how easily it is to extract data from them. This can be a problem if the new analysis is not what participants signed up for, especially if they did not mean to participate in the first place. Eysenbach and Till, however, do suggest best practice guidelines for Internet research; for good measure, these should probably include policy guidelines from offline research.
Class Discussion Comments
<YourWikiName here>
Deletions:
In last semester's, Technology, Emerging Law, and Applied Policy course, we discussed the permeating qualities of digital information and how easily it is to extract data from them. This can be a problem if the new analysis is not what participants signed up for, especially if they did not mean to participate in the first place. Eysenbach and Till, however, do suggest best practice guidelines for Internet research; for good measure, these should probably include policy guidelines from offline research.
Edited on 2005-01-14 23:04:43 by AlliWalk
No differences.
Oldest known version of this page was edited on 2005-01-14 23:04:20 by AlliWalk [Allison Walker AlliWalk]
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Eysenbach2001
Discussion leader/summarizer: Allison Walker
Key Points/Claims
Eysenbach and Till provide a summary of key points for us:
- E-communities can provide health researchers a “rich source of qualitative data” by analyzing information published and communicated on the Web.
- Internet connections and communications allow all people to share and publicize information that is disconnected from both time and space.
- Qualitative analysis can “help to systematize and codify needs, values, and preferences of consumers and professionals relevant to health and health care.”
- However, “Internet based research raises several ethical questions, especially pertaining to privacy and informed consent.” Thus, those in charge of research administration must uniquely consider research ethics when planning to conduct online research.
The article provides a brief definition of qualitative research, followed by descriptions of three types of methods used in online research. This is followed by some examples of difficulties in online research, such as the perceived negative attitudes of online community members towards researchers and, "our lack of knowledge about the psychological aspects of cyberspace."
The problem in online research is therefore the dilemma between “informed consent, privacy, and confidentiality” as the “basic ethical tenets of scientific research on people,” and the basic desire of qualitative research, “‘to acknowledge the existence of and study the interplay of multiple views and voices – including, importantly, lay voices’” in an environment where space, time, identity, and distance are either undefined, irrelevant, or simply non-existent.
Critique
Clearly there are certain situations in which available data will always suspect and/or hard to come by. As the definition above implies, qualitative analysis seeks to let those experiencing a health condition tell their story for themselves. The researchers find that they are the "lurkers" in online communities, and they are confronted with negative assumptions and reactions to their research goals. In addition, publication of research data may retroactively harm an entire community or individual by its publication, thus undermining the whole purpose of the research. Without publication there is no "acknowledgement" of the "lay voices."
There do seem to be some holes in the reasoning by Eysenbach and Till.
- Perhaps there should be a greater emphasis on why people are attracted to health-oriented, online communities - a sense of community without judgement. There is probably some degree of "public visibility" involved, however most likely from those that can empathize, not sympathize with them.
- I wondered, in the comparison with clinical studies in the section on informed consent concerning retrospective use of medical records, how many patients would have consented to an analysis of their medical records if they had been asked first?
- There seems to be a lack of understanding of community closeness by Eysenbach and Till that comes through in the section on how to gather informed consent. They suggest asking possible research subjects to opt-out' of their own community or reveal ask permission after information has already been gathered. The second method, although probably effective, seems to be forgetting that, "Internet communities' members do not expect to be research subjects."
- There was a rather good discussion on the need for participant privacy; especially the inclusion of advanced search engines using whole text searches. Technology both adds and taketh away, identity.
Connections
The one thing missing from the concluding statements by Eysenbach and Till: disclosure. In my first marketing course ever, I gathered that disclosure of what the research is about and what it will be used for is a definite ethical consideration in qualitative research. Perhaps this is implied here, but it seems an important enough topic that it should have been included.
In last semester's, Technology, Emerging Law, and Applied Policy course, we discussed the permeating qualities of digital information and how easily it is to extract data from them. This can be a problem if the new analysis is not what participants signed up for, especially if they did not mean to participate in the first place. Eysenbach and Till, however, do suggest best practice guidelines for Internet research; for good measure, these should probably include policy guidelines from offline research.