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Respect for privacy of groups that endanger public health?
- Simon Chapman (12 November 2001)
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Ownership: Rights and responsibilities
- Robert C Hsiung (12 November 2001)
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Permission, privacy are key concerns in internet research
- Carolyn Petersen (24 December 2003)
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Simon Chapman, Professor of Public Health University of Sydney
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Eysenbach and Till express concerns about secretive lurking by researchers on internet discussion lists and chat rooms, and provide compelling examples of groups who understandably resent research eavesdroppers. As I read their article, I wondered how their prescriptions would apply to efforts to research such listservers and chat rooms set up by groups whose overt agendas threaten public health and safety. Hundreds of such sites exist in areas such as race hatred, groups intent on eroding road safety measures, groups dedicated to opposing gun control, pro- tobacco interest groups supported by the tobacco industry, and the anti- immunisation lobby to name but a few. Such groups do not welcome the presence of researchers not committed to their values. Rather than using registration procedures to protect their privacy, these groups use such procedures to ensure that their discussion of strategies and tactics can proceed in an uninhibited way. They are very much not "seeking public visibility", but are seeking to screen out those who are likely to disagree with their ambitions. This is precisely why efforts at successfully penetrating and reporting on their discussions ought not be inhibited by rules developed to respect the privacy of the sort of groups described by Eysenbach and Till. They are concerned that publicity given to the discussions that take place on such sites "may negatively affect group members or harm the community as a whole." On the contrary, failure to gain intelligence on such groups justified by placing respect for such groups' privacy ahead of concern to publicize and thwart their often dangerous agendas would surely be misplaced. |
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Robert C Hsiung, Associate Professor of Clinical Psychiatry University of Chicago, Chicago, IL 60636-1507 USA
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Ownership: Rights and responsibilities
Editor-- Eysenbach and Till [1] are right to call attention to the potential difficulties of studying online communities. An underlying problem in many of their examples is that of ownership. Those who provide the mailing lists or Web sites on which online communities are based "own" those communities and have the right to set their goals. When outsiders, even ones with academic credentials, introduce their own agendas, conflict is not surprising. One solution is for investigators to establish their own communities. As owners, they would then have the right to make research a goal. They would also, of course, have the responsibility of conducting that research ethically. I host such a community, Psycho-Babble, and have employed two forms of prospective informed consent. The first was implicit. The main and Frequently Asked Questions (FAQ) pages informed members that a condition of posting messages was allowing me unrestricted use of them, for example, elsewhere on the site or in articles. The FAQ also reminded them that -- regardless of how private they felt the community was -- their messages would be public. I wrote an article describing the community [2] and made it available on the site, and the response was largely positive. Currently, prospective informed consent is explicit. My Institutional Review Board has approved the project and a disclosure statement, and I have added an official "agreement to consent" that individuals can accept by clicking a button.
Robert C Hsiung, MD 1. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001 Nov 10; 323 (7321): 1103-5. [Full text] 2. Hsiung RC, The best of both worlds: An online self-help group hosted by a mental health professional. CyberPsychology & Behavior 2000; 3 (6): 935-950. [Full text] |
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Carolyn Petersen, Web Communications Consultant Mayo Clinic, Rochester, Minnesota, 55905, USA
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The internet offers patients remarkable opportunities to find support from others in similar medical circumstances. The technology that facilitates electronic support groups and lists, however, also permits the collection and analysis of information that many individuals consider private. A recent survey of webmasters and patient advocates suggests that researchers using the internet should employ particular care with regard to permission for use of archived material and privacy of group members. Eysenbach and Till identify informed consent, privacy, and confidentiality as key considerations for researchers doing qualitative research on the internet (1). They note that to determine whether informed consent is necessary, the researcher must determine whether postings to an internet community are private or public communications. Many lists and discussion boards require participants to complete a subscription process, which leads participants to believe that their discussions occur within a closed group. However, archival technology makes it possible for nonmembers of many internet communities, including journalists and researchers, to access members’ postings. Patients’ health may improve when they participate in internet-based support groups. Among users of web-based depression support groups, more frequent use was associated with an increase in resolution of depression (2). One study of women diagnosed with breast carcinoma who participated in an electronic support group experienced reduced depression and reactions to pain (3); in a second study of breast cancer patients, researchers reported a reduction in depression, cancer-related trauma, and perceived stress after a 12-week web-based support group (4). Online support groups also provide support to caregivers, who may have minimal or no contact with others in a similar situation within their community. Parents of children with cancer reported getting information, sharing experiences, receiving general support, venting feelings, gaining accessibility, and using writing as benefits of online support groups (5). Internet-based support groups appeal to participants for many reasons. A study of users of online support groups for depression found that participants had less social support than primary care patients with major depression (2). Internet-based support groups promote access for individuals from a wide geographic area who lack access to such groups locally. Some individuals, particularly those with stigmatizing conditions, may find the relative anonymity of web-based support groups appealing. The ability to receive attention without being seen entering a health care facility or risking a loss of privacy in other ways is another benefit of online support groups. Discussion group participants are the primary beneficiaries of membership in such groups, but others may benefit from the existence of electronic lists and groups. Journalists can use archives to learn more about health conditions and identify potential interviewees. Academic researchers and social scientists may find list archives to be a source of inspiration for investigations and academic publications. Although academic institutions generally require researchers to submit research protocols for review prior to interaction with human subjects, few journalists are subject to any such review process. Thus, list participants’ perception of list privacy and the practices of those who access list archives may be in conflict. To determine how health discussion group participants view appropriate use of list and archived postings, a 10-item survey was developed to assess attitudes regarding journalists’ access to and use of lists and archives. The instrument contained three sets of three Yes-No questions related to a specific issue: 1) Is it permissible for journalists to join electronic lists intended for people with specific health conditions as a way to research assignments? 2) Is it permissible for journalists to quote list subscribers’ comments in published media? and 3) Is it permissible to quote list subscribers without informing the list of the publication venue(s) and date(s)? Respondents answering the first question in a series “No” were directed to the next series of questions. The final question solicited additional comments. In October 2003 the survey was posted to two electronic lists: Medical Webmasters (MWM), an open, unmoderated list for individuals operating medical and health-related web sites; and Patient Advocates in Research (PAIR), a closed, unmoderated list for cancer patient advocates. The survey was sent to the lists in a message identifying the investigator and requesting that participants send responses to the investigator rather than the list. The investigator had been a member of the lists for several months prior to the study. Responses were accepted for seven days. Each response was assigned a number and copied into a blank document. Email addresses, names, email signatures, and personal comments unrelated to the survey were not copied into the files to prevent identification of the respondent during analysis. The survey response rates were 2% (11 of 539) for the MWM list and 10.4% (16 of 154) for the PAIR list. All MWM respondents answered the three primary questions affirmatively, indicating that journalists may join electronic lists intended for people with a specific health condition to research stories, quote list subscribers’ comments in published media, and access list archives for background research or quotation. PAIR respondents were less supportive of these activities; 75% believe journalists may join lists to research stories, 62.5% believe quoting list subscribers in publications is permissible, and 56.3% believe it is acceptable for journalists to join lists to gain access to archives for research and publication. Agreement between respondents of the lists decreased when the questions addressed permission issues and specific uses, such as whether journalists could join lists specifically to access archived messages. For all questions, the behavior deemed permissible by PAIR respondents was more restrictive of journalists than behavior considered appropriate by MWM respondents. All MWM and all but one of the PAIR respondents answered the open- ended item inviting comments. All comments were analyzed for themes common to the respondent group and the groups combined. MWM respondents mentioned 14 distinct themes, and PAIR respondents mentioned 11 distinct themes. Overall, 16 themes emerged, with 9 mentioned by respondents of both groups. Themes mentioned by both groups (and the number mentioning the theme) included: * Journalists should ask permission before publishing list material (6 MWM, 4 PAIR) * List members have a right to privacy (2 MWM, 7 PAIR) * Journalists should act with complete transparency (e.g., announce their presence to the list, purpose for joining, etc) (1 MWM, 4 PAIR) * Reading through archived messages for research is acceptable (3 MWM, 2 PAIR) * Proper handling of posts made by a deceased person is a concern (1 MWM, 2 PAIR) * List owners and members need to have control over research use of posts (1 MWM, 2 PAIR) * List owners’ facilitation of journalists’ involvement with a list protects the members while helping the journalist (1 MWM, 2 PAIR) * Journalists should be able to do whatever is permitted on the list if they have the list owner’s approval (2 MWM, 1 PAIR) * The dynamics of a list change when a journalist joins (1 MWM, 1 PAIR) Although the sample size of this survey was relatively small, two themes emerged. First, respondents from both survey populations believe that journalists should seek permission from list members and/or webmasters prior to use of archived information. Because they view journalistic endeavors as research, they are likely to hold the same expectation of researchers. This observation should not surprise researchers inasmuch as journalists and researchers join health condition- specific lists and visit archives with information gathering as their primary goal. Second, although patient advocates are aware that archived postings can’t be guaranteed to remain inaccessible to nonmembers of the list or group, they do regard lists as a kind of protected space where members may speak frankly without concern that their words will be shared outside the group. Most recognized that individuals acting in a research capacity can join a list but viewed members’ desire for privacy as taking precedence over researchers’ goals. This desire to maintain members’ privacy over other objectives has been reported previously (6). Researchers who use electronic list archives are likely to experience a more positive response when they endeavor to respect members’ perceived right to privacy. Both medical webmasters and patient advocates have substantial experience with health-related electronic lists, the former as list administrators and the latter as list members. Although these groups most commonly approach list-related issues from different perspectives, both are concerned with facilitating electronic media as a means of patient education and support. Their perceptions about the appropriate use of electronic lists and archived list material for journalistic research offer insight into how both journalists and academic researchers should approach these electronic resources. References (1) Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001;323:1103-5. (2) Houston TK, Cooper LA, Ford, DE. Internet support groups for depression: a 1-year prospective cohort study. American Journal of Psychiatry 2002;159(12):2062-8. (3) Lieberman MA, et al. Electronic support groups for breast carcinoma: a clinical trial of effectiveness. Cancer 2003;97(4):920-6. (4) Winzelberg AJ, et al. Evaluation of an internet support group for women with primary breast cancer. Cancer 2003;97(5):1164-73. (5) Han H, Belcher AE. Computer-mediated support group use among parents of children with cancer -- an exploratory study. Computers in Nursing 2001;19(1):27-33. (6) Smith J. Members only: electronic support groups closed to the average surfer. JNCI 2003;90(22):1696. Competing interests: None declared |
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