Country: Germany and Canada
Discipline: Cybermedicine and Health, Bioethics
Summary:
The focus is not research involving children or young people but this is an interesting article that provides a good overview of the issues that arise with qualitative analysis of internet communities such as patient self support groups. The paper begins by recognising the value of this kind of research in health care. It identifies different research methods and discusses questions such as: Are internet postings private or public communications? Can informed consent be waived? And, how can informed consent be obtained? The paper also reports on evidence that internet communities can be damaged by research and that members do not expect to be research subjects:
When I joined this, I thought it would be a support group, not a fishbowl for a bunch of guinea pigs. I certainly don’t feel at this point that it is a safe environment, as a support group is supposed to be, and I will not open myself up to be dissected by students or scientists. (King in Gunther and Till, p.1104).
Country: UK
Discipline: Education
Summary:
This paper contains a discussion of the ethical issues in research involving homepages and the authors note that while there is some guidance for conducting research on-line, there are no universally accepted guidelines and no detailed consideration given to homepage research.
Country: 11 countries including Australia
Discipline: Ethicists and researchers
Summary:
This 33 page document includes questions to ask when undertaking internet research. One interesting issue is the question of whether research participants are best understood as “subjects” or as “authors” (p.7)
The document contains a useful annotated bibliography (up to 2003) pp. 11-17. There is also an interesting case study which details the hostile response of participants in a computer assisted language learning internet community when an opt out form of recruitment was used. Because an opt in method of recruitment was thought to be equally problematic, the solution involved the creation of a site for the project.
The report uses unexplained acronyms – which is not helpful for those not familiar with internet terminology/jargon etc.
There is an addendum with sample consent forms for parents and children (pp.21-28). These are useful as an example of internet research rather than a prototype information sheet/consent form.
Country: USA
Discipline: Various - workshop. For full list see ‘participants’.
Summary:
This site contains the report of a 1999 workshop. See “Agenda” on the website for the full list of questions relating to research on the internet addressed in this report.
The workshop was conducted by the American Association for the Advancement of Science Program on Scientific Freedom, Responsibility and Law, in collaboration with the National Institutes of Health Office for Protection from Research Risks.
The report concludes with a set of recommendations (research and education agenda) developed by workshop participants. This is an interesting a useful part of the report e.g. ‘Develop case studies that illustrate the ethical and legal issues associated with Internet research’ (p.16). Also, in an ‘action agenda’: ‘In their proposals, researchers should be specific about the possible benefits and harms to their subjects, how they plan to minimize risk exposure, and their methods of securing informed consent from prospective subjects’ (p.17).
Topics covered in the report are: benefits and risks; informed consent and deception in internet research; privacy and confidentiality. Throughout the report there is also some reference to vulnerable populations such as children.
Country: USA
Discipline: Cross-disciplinary
Summary:
A peer-reviewed online journal dedicated to Internet Research Ethics. Only one issue (January 2008) has appeared so far. Full text of that issue is available from the website.
Country: USA
Discipline: Pediatrics and Bioethics
Summary:
This is an interesting article that looks at cyber research, the value of this research, fair subject selection and informed consent. To start with, the authors identify ways in which adolescent research can be conducted using social networking sites. Possible analogies for research on MySpace are considered and assessed e.g. eavesdropping on conversations in a coffee shop and research on newspaper personal ads.
Moreno et al. conclude that research on sites such as MySpace provide 'an opportunity to learn about adolescent health that is otherwise unavailable' because it provides 'an unprecedented opportunity to study and modify adolescent risk behaviour.' The authors claim that the main health risks to adolescents stem from 'risk-taking behaviours' and adolescents are 'among the least likely population to visit a physician' so they are unlikely to be identified in the clinical setting. Therefore, 'innovative approaches' are needed to identify teenagers who are at risk and social networking sites 'may provide a new, efficient, and effective venue' for research on adolescent risk behaviours. In contrast to traditional research methods, these sites provide larger databases and reduce the 'administrative burden' for researchers (p.158). Moreno et al. also conclude that social networking web sites provide access to a representative sample of adolescents and 'may provide as much or more fair subject recruitment than some traditional venues for adolescent research such as clinics and schools' (p.158).
Moreno et al. suggest 3 levels of consent to consider in adolescent research and social networking sites: 1) the young person or parent; 2) the MySpace community; and 3) the MySpace enterprise. They also put forward a controversial view, suggesting that a young person's capacity to consent can be assessed by the information in their personal web profile (p.159). An important distinction they make is that some observational studies of public websites may be considered exempt from ethics committee review, but that does not mean that it is okay to disclose identifiable information in a presentation or publication
Country: USA.
Discipline: Mass communication.
Summary:
An interesting account of ethical issues in studying human communication on the internet that is illustrated with examples from the author's own research experience. Stern describes a procedure she designed to procure parental consent, which she thought was 'quite sound' and which had the approval of the university IRB but nevertheless elicited a very poor response and only one signed parental consent form. With the 'benefit of hindsight' she discusses probable reasons for the low response rate and the difficulties in securing parental consent for online research (pp.279-282):
- The 'unique intersection between Internet use and adolescence'. Adolescents are typically working towards independence and characteristically, adolescence is a time when teenagers choose to keep parts of their lives private (p.280). Asking a teenager to 'secure their parent's permission to talk about their internet use may be perceived as insulting: '...I mean its my computer, my web page, I pay for my own Internet and I talk to anyone I want in real life or online ...' (p.280).
- Parents may be reluctant to allow their children to interact with a stranger over the internet.
- Practical difficulties and there is a deterrent effect in requiring parents to sign and mail back a hard copy consent form.
The author also discusses the dilemma researcher's face when they encounter distressing information in online research with children and young people (pp.282-285). Also, according to Stern, adolescents using the internet might regard the concepts of 'public' and 'private' differently to adults e.g. they consider their communication as 'private' when 'the people they know in real life (e.g., parents, friends, teachers, etc.) do not see, hear or read it, regardless of who else does' (p.277). On the other hand, teenagers also often have 'feedback mechanisms' on their homepages which suggests that they want a public audience (p.278).
Stern worries that laws and guidelines which aim to protect human subjects may not be applicable to some research conducted on line and because of that, researchers may be discouraged from conducting online research which has the potential to 'better understand adolescents' and their uses of and relationships with the internet (p.285).
Country: UK
Discipline: Mass communication.
Summary:
This is a very interesting chapter. It combines issues relevant to research on children and young people and issues in Internet research. It aims to:
- Advance understanding of research methodologies for this environment
- Explore ethical dilemmas facing online researchers studying adolescents
- Contribute to the debate on establishing guidelines for virtual research.
There is a section on the "ethical dilemmas of virtual youth research" which includes discussions of the "hurdle" presented by a requirement for parental consent, online power relationships, issues of confidentiality and suggestions on what to do when a researcher becomes aware of e.g. a young person planning to meet with someone from a chat room (p.307).
Bober argues that we need a public debate about both the benefits and the dangers of cyber research. Special protections for children and young people need to be taken but we should not let "moral considerations, aimed at protecting young participants, paralyze the research nor should ethically difficult questions be avoided" (p.309).
Country: USA
Discipline: Computing
Summary:
These are useful guidelines or 'rules of thumb' which are intended as a 'general guide' rather than a 'set of rigid rules' trying to capture all ethical issues that may arise. The author invites others to write their own version of these guidelines because her 'goal' is 'to create a set of contrasting interpretations so individuals and IRBs can find a set they are most comfortable with'.
These guidelines set out when it is acceptable to freely quote without consent and when consent is typically required. There is some guidance in relation to people under 18 and that suggests that consent is required and that parental consent is required as well. There is some discussion of how parental consent should be obtained. Bruckman also suggests that researchers need the permission of an online group's 'leader/gatekeeper' before soliciting participation of a 'vulnerable or under-age population' and that researchers consult their IRB for guidance on whether their study is low risk.
There is an interesting section on 'research intergrity versus ethical obligations'. In this, Bruckman claims that when getting consent is 'logistically difficult or potentially disruptive to the environment, some researchers have concluded that consent is not required'. She argues that 'consent is still required, and substantially disrupting the environment is not acceptable. In such a situtation, the investigator must fundamentally rethink the research plan or even abandon it, not lessen their ethical obligation.'
Other useful issues covered are 'hate speech', research on chatrooms and changing risk levels in research.
Country: Canada
Discipline: Sociology
Summary:
This is a very useful article that looks at some of the main issues that have been debated in the published literature addressing research ethics and the internet. The 3 main issues it focuses on are:
- whether the Internet constitutes a private or a public space;
- whether the human subject paradigm is appropriate when considering the ethics of Internet research
- whether cyber communities and participants should expect confidentiality and anonymity when researchers contain or consider them in research.
There is some discussion of research involving vulnerable populations such as children and young people
Country: USA
Discipline: Various
Summary:
This is a really useful book containing sections on:
(1) Foundations of virtual research ethics;
(2) Media, messages and ethics?;
(3) Researchers/Researched? Research ethics in practice;
(4) Online research with minors - special considerations? (There are 2 chapters in this section. These are the chapers by Stern and by Bober which are summarized above in this annotated bibliography); and
(5) A call to researchers
The following is a selection of chapter titles:
* Virtual research ethics: A content analysis of surveys and experiments online (see separate entry in this bibliog.)
* Ethics in internet ethnography
* Blurring the boundaries: Ethical considerations for online research using synchronous CMC forums.
* Conducting ethical research online: Respect for individuals, identities and the ownership of words.
* Peering into online bedroom windows: Considering the ethical implications of investigating internet relationships and sexuality
* What if you meet face to face? A case study in virtual/material research ethics.
Country: USA
Discipline: Psychology
Summary:
This is an interesting chapter. In order to get a full appreciation of the issues, the authors (who have a professional involvement in both research and ethics) have themselves served as participants in online surveys and experiments. The chapter provides some historical background on ethics guidelines for online research.
From their reading of the current literature, the authors note two trends i.e. that 'behavioural researchers were soliciting participants for surveys, personality tests and experiments in ever increasing numbers' and 'that the literature focused largely on how to do surveys and experiments on the internet' and how results compared with results in laboratory studies. The authors identify the lack of 'an empirical assessment of what internet researchers were actually doing' with regard to methodological and ethical practice.
The content analysis in this chapter is an assessment of how researchers conduct their studies online and follow ethical guidelines. While this is a really useful chapter, there is still a need for more detailed concrete examples of studies to clearly illustrate the ethical issues so that the reader can get a full appreciation of the issues.
The section on debriefing is particularly interesting. Also, the authors' observation that information technologists helping with the implementation of online studies did not understand their concerns with consent and debriefing and 'often seemed to regard these pages as blemishes on the face of an otherwise attractive website.'
Country: USA
Discipline: Communication
Summary:
This paper critiques Frankel and Siang's influetial 1999 workshop report - "Ethical and legal aspects of human subjects research on the Internet" (see entry in this bibliography). Walther claims that the report neglects to consider some common methodological approaches such as quantitative research or research involving content or thematic analysis where subjects; characteristics and messages have no bearing.
Country: Canada
Discipline: Research ethics
Summary:
This is an interesting document which includes useful sections such as:
Is list mining a form of naturalistic observation and isn't this type of research exempt from review?
How can user expectations of privacy be assessed?
The document inclues some examples of research which may be exempt from ethics review etc.
Rather surprisingly it rules out the use of websites frequented by minors in research projects. It also states that "digital communication in any form that can be identified as being from a minor must not be included in teh data collection"
Country: USA
Discipline: Information studies
Summary:
This is an interesting and useful article. It does not specifically address the issue of young people in research, but it is relevant to internet-based research involving young people.
This article describes a survey of 750 United States Human Research Ethics Committees (HRECs) in which respondents indicated a 'growing prevalence' of online or Web surveys in academic research. It deals with online survey products such as Zoomerang, Survey Monkey, and Questionpro. The questions addressed in this paper include:
A useful suggestion for other forms of internet research include: 'Researchers shall provide a forum for participants to ask questions online before consenting to participate in a research project.'
This article also makes the important point that 'methodological choices are ethical choices' - (methods impact on human subjects) - and therefore, the line between method and research ethics can be blurred.
Country: USA and International
Discipline: Multi-disciplinary
Summary:
The mission of the Internet Research Ethics Digital Library is to collect articles and other scholarly publications discussing important ethical issues, concerns, and best practices for gathering data from human subjects on the Internet. It will pull together the disparate literature on Internet Research Ethics into one searchable and annotated digital library.
Look for the IRE Digital Library to be active in February, 2010.
