Registro en el Libro Registro de Hidrocarburos. ….93

Online support groups appear to play an important role in promoting mutual patient- to-patient support, customer health information and practitioner-patient communication (Skinner, 2002). This has led to a growth in the number of researchers using data from the internet to investigate the interplay of health behaviour and health services. The main aim of ethics is that no harm should come to people as a result of research and several articles have been issued on the significance of ethical issues in research that use Internet groups (Jones, 1994; Roenoer et al., 1995; Allen, 1996; Reid 1996; Frankel and Siang, 1999; Rodriguez, 1999; Sharf, 1999; Hsiung, 2000; Eysenbach and Till 2001; Sixsmith and Murrary, 2001).

The internet provides access to an unprecedented archive of human life and activities (Lindif and Shatzer, 1998; Jones, 1999). It differs from other communication tools and media in many aspects that may influence study design. It reaches past national borders, cultural boundaries and legal jurisdictions (Mitra and Cohen, 1999; Geist, 2001; Commercenet, 2002). It incorporates various patterns of content and ways of communication (DiMaggio et al., 2001) and offers technical advantages for efficient data collection and processing (Lindlif and Shatzer, 1998; Turkle, 1999).

These disparities between face-to-face and online environments oblige researchers to adapt existing methods used for face-to-face research. Adapting some methods and using them for online environments may become difficult due to the ethical conventions of some disciplines (Frankel and Siang, 1999; Bruckman, 2002).

Every unique research methodology is bound by and has different ethical considerations during the course of designing, conducting and reporting of the research (Emerton and Bowles, 2003). For example, in some internet mediated research the extent of risk to participants might not be easy to manage due to the lack of direct control over the behaviour and identities of the participants. Accessibility to the internet may be an issue and might exhibit implications for consent, debriefing, withdrawal and participants’ protection (Hewson and Buchanan, 2013).

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As is the case in the offline life, the internet has a community and while the offline

community is commonly defined as a cohort of people with different characteristics share common views, linked by social ties, and involves in combined action in geographical locations (MacQueen et al., 2001). Internet communities appear to be built on sharing interests rather than sharing demographical features (Wellman and Gulia, 1999). The idea of conceptualising internet research sites as communities comes from the view that participants with their textual traces are dealt with as human subjects.

Historically, community has usually been identified with place (Frenback, 1999; Jones, 1999) and this led researchers to view the Internet environments as cyber- communities or virtual communities (Cavanagh, 1999; Fernback, 1999; Bassett and ORiordan, 2002). However, common methods of categorizing spaces can be difficult in Internet research as they do not have a tangible base, may disappear without notice, and borders may not be easily defined due to hyperlinks and other complexities in designing software (Mita and Cohen, 1999).

3.3.7.2 Implications and guidance for researching ethically on the internet

The welfare and rights of any participants who may be influenced directly or indirectly during studies that include human beings are protected by the terms and conditions of the human subject protocol (NHMRC, 1999). Participants’ rights have also been protected by international guiding principles of ethical research which come from The Belmont report (NCPHSBBR, 1979; Harrington et al., 2010) and suggest:

“ 1- Respect for persons

2- Beneficence (the importance to maximise possible benefits and minimise possible harms)

3- Justice”

Introducing guideline ethics for online research starts with the hypothesis that online research containing human subjects should obey existing models (White, 2002). However, some problems have been identified in experimental research including the wide variation in the sites on which online research can be conducted (Kendall, 1999;

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DiMaggio et al., 2001). In addition, establishment of valid, ethical research requires that the methodology matches the characteristics of the site to the aim of the study (Emerton and Bowles, 2003).

The implications and guidance for researching ethically on the internet are discussed briefly from four perspectives; confidentiality, informed consent, harm and linking public and private data, which are explored in more detail in the next section.

3.3.7.2.1 Confidentiality in online research

Research suggests that online content in the public domain are based on the inherited insecurity of information posted online (Jones, 1994; King, 1996; Waskul and Douglass, 1996). Therefore, it is assumed that Internet users should understand that their online information can be susceptible to manipulation, interception and republication. However, it is hoped to apply private status to all sites to protect users, using the principal that their privacy is altered by the medium (Boehlefeld, 1996; King, 1996).

Numerous criteria have been proposed to determine the extent of privacy proposed by online sites users. For example, technical constructions of a site such as use of

encryption software, passwords or members only can give views of users' expectation

about "private" and public sites (Allen, 1996, Boehlefield, 1996). This is particularly beneficial in mixed sites that have different privacy settings such as bulletin boards or chat rooms (Emerton and Bowles, 2003).

3.3.7.2.2 Informed consent

The World Medical Association Declaration of Helsinki (2000) has confirmed the ethical principle of autonomy to health research, that participants deserve respect and their rights to privacy, dignity and health should be protected at all times (WHO, 2001). This concept is usually established via the process of informed consent, in which participants are informed about the ethical aspects of a study and they have the chance to freely discuss and decide whether they wish to participate (Frankle and Siang, 1999; Tri-council of Canada, 2000). However, lack of personal contact in

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online research can lead to a range of ethical and research concerns such as difficulty in enrolment and seeking informed consent (Flicker et al., 2004), since the methodology used in traditional face-to-face contact- when consent is obtained as a signed authority document- is not practical and seems to be unworkable in internet research (Bassett and O'Riordan, 2002; Walther, 2002). Therefore researchers suggested that the whole procedure of online research should be established online (Nosek and Banaji, 2002).

Obtaining informed consent online requires all the components that would routinely be part of the consent procedure to be available online. These can be placed individually or collectively in a hyperlink through the internet (Flicker et al., 2004). However, researchers sometimes face the logistical difficulty of contacting participants as they need to decide who the participants are and the type of consent needed. In addition, it is not guaranteed that online research participants may share demographic variables with the online identity used in the research site (Frankel and Siang, 1999; Walther, 2002). This can be an issue especially if the mental capacity or age of the participant provides a legal barrier to them being legally unable to provide informed consent (Junes, 1994; Bruckman, 2002; Walther, 2002). Some researchers believe that negotiations should start with the group owner prior to data collection (Waskul and Douglass, 1996). Ess and The Association of Internet Researchers recommended that obtaining permission from facilitators, moderators or list owners might be enough in the online sites with indefinite group membership (Ess and AoIR, 2002).

3.3.7.2.3 Harm

Researchers are responsible for the protection of research participants from inadvertent harm during the research process (NHMRC, 1999). Protecting confidentiality and privacy of the participants on the internet is a new challenge for the research environment (Frankel and Siang, 1999; Eysenbath and Till, 2001). These challenges can include limiting online data for service delivery and research purposes, protecting online support users from other users or from themselves and ensuring that results do not trigger embarrassment, breach privacy or cause inadvertent harm to participants (Flicker et al., 2004).

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Researchers can directly harm their participants, harm the setting of the research or ease harm by third parties (Emerton and Bowles, 2003). However, with online contact, low chance for physical harm can be seen as a risk, but inadvertent direct harm by researcher focus on two concerns; failure to observe the results of the research and breaching of the trust and expectations (Emerton and Bowles, 2003). Other insults, threats, blackmail and harassment, which also takes place in the office environment, may appear in unique forms in the online environment. However, it has been thought that opportunities for defence against non- physical (online) harassment can be better than that in an offline environment (Spertus, 1996).

3.3.7.2.4 Linking public and private data

There are ethical concerns about whether analysing data in the public domain needs consent. However, previous commentators argue that personal conversation on internet sites such as message boards or chat rooms, by their nature, are public discourse and not subject to the ususal research constraints with participants. Therefore, a consent procedure or ethical approval from participants is not necessary (inn and Lavitt, 1994; Sudweeks and Rafaeli, 1996; Salem et al., 1997; Sharf, 1997). On the other hand, some researchers suggest that online message boards are both “privately public” and “publically private” as users may not know that their postings might be used for research purposes (Waskul and Douglas, 1996). Others have indicated that the requirement for consent seeking to be necessary are conditional and might be dependent on group norms, size and accessibility of the site (Eysenbach and Till, 2001).

In spite of the different levels of thought and opinions about researching ethically on the internet Flicker et al. (2004) have established some points that can be used as ethical guidelines for researching online communities. This guideline includes 12 points and can be seen from Table 19.

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“

Ethical Guidelines for Researching Internet Communities

1. Supply a readily available link to the individuals and institutions responsible for the research project.

2. Describe study aims, potential benefits, and harms.

3. Provide information about what data will be collected and how it will be used. 4. State clearly what kinds of services you are (and are not) able to provide. 5. Identify any commercial or competing interests.

6. Offer direct contact information for the principal investigator and/or study coordinator, so that participants can get their questions answered.

7. Seek informed consent.

8. Grant users that do not consent to be part of research comparable service. 9. Be explicit about steps taken to preserve confidentiality and anonymity.

10. Create policies and procedures to ensure the well-being of the community (e.g., protocols for maintaining community values, moderating site, and managing crisis); make policies public and transparent.

11. Limit the ability of search engines to access message boards directly to safeguard privacy.

12. Gain approval from a credible human subjects ethics review committee.

Table 19: Ethical guidelines for researching internet communities (established by Flicker et

al., 2004. P:132)”

Recent updates regarding the ethical guidelines for internet research

The British Psychological Society (BPS) (2013) published a recent report on ethical concerns related to Internet-mediated research, outlining ethics guidelines for such research. The BPS guidelines suggest that the normal principles of ethical research with human participants apply to internet-mediated research, and the basics of ethical practice are not changed. However, the guidelines state that the implications of these ethical principles for practice may differ in Internet-mediated research contexts, and aspects of online environments may make particular issues salient in ways they have not been in traditional (face-to-face) research. Table 20 outlines the BPS’s summary

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of the main ethics issues for researchers to consider when designing, implementing or assessing an Internet-mediated Research study.

“

Principle Considerations

Respect for the autonomy and dignity of persons

Public/private distinction – The extent to which potential data

derived from online sources should be considered in the public or private domain;

Confidentiality – Levels of risk to the confidentiality of

participants' data, and how to minimise and/or inform participants of these risks, particularly where they may potentially lead to harm;

Copyright – Copyright issues and data ownership, and when

permission should be sought to use potential data sources;

Valid consent – How to implement robust, traceable valid

consent procedures;

Withdrawal – How to implement robust procedures which

allow participants to act on their rights to withdraw data;

Debriefing – How to implement robust procedures which

maximise the likelihood of participants receiving appropriate debrief information.

Scientific value Levels of control – How reduced levels of control may impact

on the scientific value of a study, and how best to maximise levels of control where appropriate.

Social responsibility Disruption of social structures – The extent to which proposed

research study procedures and dissemination practices might disrupt/harm social groups.

Maximising benefits and minimising harm

Maximising benefits – How each of the issues mentioned

above might act to reduce the benefits of a piece of research, and the best procedures for maximising benefits;

Minimising harm – How each of the issues mentioned

above might lead to potential harm, and the best procedures for minimising harm.

Table 20: Ethical guidelines for researching internet communities (British Psychological Society, 2013. P: 5).”

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