Ethics 5 – Informed consent

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When conducting research which involves people, it is important that they are able participate of their own free will. To be able to decide whether to participate, they will need to know in advance what the study involves, what will be expected of them and what any potential risks or benefits might be. They should be able to make their decision freely and without coercion and be able to change their mind should they feel the need. These are the foundations upon which the principle of informed consent is based:

  • autonomy – participants should have sufficient time and (appropriate) information to make a choice.
  • beneficence – participants should be able to experience any benefits and be kept free from harm.
  • justice – ensuring any opportunities, benefits and risks are distributed fairly and equitably.

As researchers, we are guided by the principles produced by our institutions and professional associations mentioned in an earlier post. We also have certain legal obligations enshrined in the Human Rights Act 1998 and the Data Protection Act 1998.

Gaining consent should not be considered a single, one-off event conducted at the start of (or possibly later in) a study. Rather it should be an ongoing process of mutual exchange, where the researcher regularly reminds the participant that they are involved in a study and the participant is free to ask the researcher questions and indeed is free to withdraw at any point. Practically, this often involves the researcher producing a Participant Information Sheet (PIS) which provides the details of the research in clear, unambiguous language. (An exemplar from my institution can be found here) The prospective participant is given this and provided with adequate time to make a choice about whether to proceed. They are then asked to sign a consent form, which asks them to confirm they understood the information they’ve read, reminds them of what they are providing their consent for and reminds them they can withdraw at any point. Would that it were only that simple!

There are numerous circumstances in which obtaining consent in the way described above are problematic. In some cases, participants may be poorly placed to provide their consent because they have reduced faculties (those with Alzheimer’s for example), lack maturity (the young) or may be indisposed (in a coma). Some studies may not be on specific individuals, but be on communities or organisations; would this require consent from all members, or just a ‘gatekeeper’ or advocate? Research might be conducted at particular events or in locations where people are involved en masse and seeking consent from all would be impractical. Some situations involve a participant who has provided consent, but their usual activities continually bring them into contact with other people on a transient basis; a market stall holder, a librarian or police officer for example. How can the consent of those additional people be obtained without having an impact on the natural activity of the participant, or perhaps compromising the research data? Which all raises the question whether informed consent is always required, or are there circumstances under which obtaining it might not be necessary and if so, what are the factors which need to be taken into account?

It is not always possible or practical to obtain consent, especially in observational studies in unbounded areas like a shopping mall. Using posters or notices, it may be possible to forewarn people that research is taking place, but obtaining consent would be challenging. There is also the issue that by providing notice that research is being undertaken, naturalistic observation becomes impossible because people change their behaviour. Research conducted in this way is said to be ‘covert;’ the participants are unaware that they are being observed. In some circumstances, it may actually be harmful to obtain the consent of individuals, such as in obtaining a signature from someone involved in illicit or illegal activities. This is when ethical issues and the needs of scientific discovery need to be very carefully considered and balanced. Hudson and Bruckman (2004) looked to the U.S.6 regulations governing academic research, which advise that research can only be conducted without informed consent if:

  1. the research is not human subjects research
  2. the research is exempt from IRB (insitutional review board) oversight, or
  3. when an IRB issues a formal waiver of consent.

Like Hudson and Bruckman, I too have concerns about the first two. I’ll discuss human subject research in a future post, but side-stepping ethical review is neither an option, nor something I’d even consider. Here in the UK, we don’t, to my knowledge, have the notion of a ‘formal waiver of consent,’ but our ethics panels are at liberty to approve research where consent will not be sought, provided an adequate case can be made. What indicators can we use then to suggest when informed consent may not need to be sought. The American Sociological Association Code of Ethics (1999) provides guidance on when consent should be sought:

when behavior of research participants occurs in a private context where an individual can reasonably expect that no observation or reporting is taking place.

but qualifies this by suggesting that consent may not be needed where ‘naturalistic observation in public places’ is conducted, provided participants are likely to suffer minimal risk and where the research could not otherwise be conducted practicably. This of course means we need to refer back to the previous discussion on how we differentiate between public and private. McKee and Porter (2009, 11) proposed that for a given set of circumstances, the degree of privacy and level of sensitivity should be established, then a point representing that located on the Sveningsson diagram. By adding a diagonal, it is proposed that anything above and to the right would need informed consent.

Adapted from: MCKEE, Heidi A. and PORTER, James E. (2009). Playing a good game: Ethical issues in researching MMOGs and virtual worlds. [online]. International journal of internet research ethics, 2 (1), , 11.
Adapted from:
MCKEE, Heidi A. and PORTER, James E. (2009). Playing a good game: Ethical issues in researching MMOGs and virtual worlds. [online]. International journal of internet research ethics, 2 (1), , 11.
Of course different researchers or participants might locate the same situation at different points on the chart, but the intention is not for the chart to provide definitive answers, but act as a heuristic to facilitate discussions and negotiations. Ethical issues often manifest themselves as gray, rather than black or white. By also considering the degree to which the researcher would need to interact with participants, McKee and Porter offer a more sophisticated graphic which can further assist decision making:

Adapted from: MCKEE, Heidi A. and PORTER, James E. (2009). Playing a good game: Ethical issues in researching MMOGs and virtual worlds. [online]. International journal of internet research ethics, 2 (1), 30.
Adapted from:
MCKEE, Heidi A. and PORTER, James E. (2009). Playing a good game: Ethical issues in researching MMOGs and virtual worlds. [online]. International journal of internet research ethics, 2 (1), 30.
Of course these determinations make the assumption that it is the researcher(s) making the decision, but perhaps there is space too for including members of the group under study in discussions, thereby shifting the power relationship back towards participants somewhat?

Having considered at length whether consent is necessary, the actual act of obtaining it is not without its challenges. In an online setting, researcher and participant are likely to be geographically separate. Rather than require a physical signature on a printed document, the Internet offers a more direct, immediate option. On many websites, it is standard practice to require new subscribers to ‘sign’ their acknowledgement of terms and conditions by ticking a box; the same technique could be applied for giving consent. Of course it is also true that the majority of people don’t read terms and conditions before ticking the box; this is not something which would be acceptable in a research context, since participants could hardly be considered ‘informed’ if they are not aware of what they are agreeing to. This can be ameliorated to some extent by ensuring the PIS is concise and doesn’t require too much reading, or by breaking down the terms on the consent form into separate steps, each requiring a tick to acknowledge acceptance. Even then, as Flick (2015) observed, it is difficult for a ‘remote’ researcher to be able to tell whether a participant gave considered consent in the same way that a researcher in a face-to-face setting might be able to. The option to quickly seek clarification about an issue they’re unsure about, is somewhat more difficult for an online participant. Nor does the online researcher receive any visual clues that a participant might be hesitant about something, in the same way that a face-to-face researcher might. Flick also argues that authenticity is compromised online; how can a researcher know that the person giving consent is who they say they are; though of course the same could be equally true in face-to-face setting, or indeed in traditional posted survey research. Once more we are faced with balancing the need to undertake the research, against the shortcomings of the medium, as far as informed consent is concerned.

Having negotiated these troubled waters and finally obtained consent from participants, the matter is not yet closed. Particularly in online settings, the composition of those ‘present’ in a social space tends to fluctuate; people tend to come and go as time passes. If consent had been sought and obtained at the outset, that might no longer apply to all present. Once more we find ourselves balancing the need to obtain consent against becoming intrusive with constant reminders and perhaps damaging the nature of the group, or the interactions therein. There is another element we must consider when the research approaches conclusion; whether someone who gave consent to participate also meant consent for their contributions to be shared when the research is published or reported. This need not be too troublesome provided this was included in the PIS at the outset and that participants understood that information they provided might be shared, and in what way it would be shared. Providing anonymity tends to be the default means to smooth this path, but that too can be problematic, as I’ll discuss in a future post. It is also becoming increasingly the norm for research data to be shared more openly, together with the report, thesis or article. What guarantees might a participant have that the terms under which they gave their consent will be adhered to by some future researcher, conducting a different study and using the data in a completely different way?

Wherever possible, involving participants in discussions about what they feel constitutes appropriate and acceptable behaviour for a researcher, is a desirable aspiration. Whether consent is required can form part of that discussion. Rosenberg (2010) identified three distinct sets of views amongst participants. Some would not wish to participate in any form of research without having first provided their consent. Others feel that consent is not required, provided the researcher does not become involved or participate within the activities. The final group would be comfortable with the researcher interacting and gathering data without consent, provided they don’t deceive participants to gain information. That there are different views will come as no surprise. If all those views were to be accommodated, there would be some research or some methods which could not be undertaken. The debate then becomes one of the worth and value of the research for the greater good. Do the benefits outweigh the harms?

 

BUCHANAN, Elizabeth A. and ZIMMER, Michael (2015). Internet Research Ethics. [online]. In: Edward N. Zalta (ed.). The Stanford Encyclopedia of Philosophy. Spring 2015 ed., .

FLICK, Catherine (2016). Informed consent and the Facebook emotional manipulation study. [online]. Research ethics, 12 (1), 14-28.

HUDSON, James M. and BRUCKMAN, Amy (2004). “Go away”: participant objections to being studied and the ethics of chatroom research. [online]. The information society, 20 (2), 127-139.

MCKEE, Heidi A. and PORTER, James E. (2009). Playing a good game: Ethical issues in researching MMOGs and virtual worlds. [online]. International journal of internet research ethics, 2 (1), , 5-37.

ROSENBERG, A. (2010). Virtual world research ethics and the private/public distinction. [online]. International journal of internet research ethics, 3 (1), 23-37.

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