When a piece of research is being planned consideration should be given to the issue of informed consent. Informed consent implies that the subjects of the research are aware of the purposes of the research and have agreed to be participants.
In a study in which inter-agency responses to child abuse were explored (Hill, 1999), it was important that the participants were aware that the purpose of the research was not to find fault with the practices of individual professionals. Child abuse is an area where professionals have been particularly susceptible to public criticism, therefore the researcher had to be particularly sensitive to the anxieties that could result from her presence at training sessions.
Informed consent is not just a matter of getting research subjects to agree to be questioned or observed. That would be consent but the key is the 'informed' element. Ensuring that research subjects (or their parents/guardians, if children) have been provided with adequate information to enable them to understand the nature, purpose and outcomes of the research. This includes being aware of any potential risks participants may incur as well as being aware of 'the limits to their participation' (Sin, 2005, p. 279)
Corti et al. (2000, para 2.1) suggested that obtaining informed consent required that potential participants must be aware of their right to refuse to participate; understand the extent to which confidentiality and anonymity will be maintained; and be reminded of their right to renegotiate consent during the research process.
Prior to conducting research, investigators enter into a documented agreement with participants that clarifies the nature of the research and the responsibilities of each party.
When obtaining this informed consent, researchers use language that is reasonably understandable to the participants.
Informed consent is obtained before recording the subjects in any way.
Investigators explain significant factors that may be expected to influence the person's willingness to participate (such as risks, discomfort, adverse effects, or limitations on confidentiality) and other aspects about which the person may inquire.
Researchers tell participants that they can withdraw from the research at any time as well as explain the foreseeable consequences of declining to participate or withdrawing.
For persons who are legally incapable of giving informed consent, investigators nevertheless provide an appropriate explanation, obtain the person's consent, and obtain appropriate permission from a legally authorized person, if such substitute consent is permitted by law.
Researchers inform participants of their anticipated sharing or further use of personally identifiable research data and of the possibility of unanticipated future uses.
Investigators provide a prompt opportunity for participants to obtain appropriate information about the nature, results, and conclusions of the research, and they attempt to correct any misconceptions that participants may have.
These points may or may not be entirely appropriate for other subject areas but they do foreground the issues of informed consent.
In some settings informed consent is problematic. Lawton (2001a) undertook a participant observation study in a hospice. Informed consent was difficult to obtain from patients and the researcher was unable to do other than assume that consent remained valid after patients had deteriorated physically and mentally.
In some circumstances, it is neither possible nor appropriate to obtain informed consent. For example, if you are observing how people interact at a football match it is not feasible to inform the people in the crowd about your research.
The American Psychological Association (2016) noted possible exceptions to securing consent.
8.05 Dispensing with Informed Consent for Research
Psychologists may dispense with informed consent only (1) where research would not reasonably be assumed to create distress or harm and involves (a) the study of normal educational practices, curricula, or classroom management methods conducted in educational settings; (b) only anonymous questionnaires, naturalistic observations, or archival research for which disclosure of responses would not place participants at risk of criminal or civil liability or damage their financial standing, employability, or reputation, and confidentiality is protected; or (c) the study of factors related to job or organization effectiveness conducted in organizational settings for which there is no risk to participants' employability, and confidentiality is protected or (2) where otherwise permitted by law or federal or institutional regulations.
Sin (2005, p. 290) argued against ritualistic adherence to ethical procedures. Sin used a mixed-method research project (the Growing Older (GO) project) to show how it is impossible secure a standard response from all individuals, due to the contingent nature of negotiating and maintaining consent during interviews.
…different stages and different components of research may require the negotiation of different types of consent, some of which may be more explicit than others. Sampling, contact, re-contact, and fieldwork can be underpinned by different conceptualization and operationalization of 'informed consent'. This behoves researchers to move away from the position of treating consent seeking as an exercise that only occurs at certain points in the research process or only for certain types of research.
The GO study involved a complex process of recruitment of participants, much outside the control of the researcher.
For those individuals who agreed to take part in the GO study and had
arranged for suitable dates and times to be interviewed, a further stage in the consent-seeking process came into play. Before commencing with an interview, field researchers were instructed to remind respondents of the purpose of the GO study and to outline briefly the format of the interview that comprised both structured and unstructured sections used to elicit quantitative and qualitative material. The field researchers would assure respondents that all data would be treated as confidential and every efort would be made to ensure anonymity.
The respondent would then be asked if s/he was clear about the purpose
and requirements of the interview and whether s/he would like more information. If the respondent was satisfied and felt comfortable enough to proceed, s/he would be asked to sign a consent form. This stated that s/he understood the purpose of the study and that s/he agreed to be interviewed. If, for any reason, the respondent was not able to sign the form, the interviewer would ask permission for the form to be signed by a member of the household. While consent forms signed on behalf of someone else have no legal validity, most research ethics committees nonetheless recommend that they should be used in such instances. (Sin, 2005, p. 286)
Sin further explained that interviewers were also instructed to inform respondents that they had the right to end the interview at any time and that signing the consent form did not constitute a guarantee to complete the interview. Whatever decision respondents made would have no impact on their benefit entitlement or service provision. The use of the consent form was not a problem and all the participants signed it in this instance;
although one must not assume that it would go smoothly in every case. The presentation of the form, its content and wording, as well as the interviewer's way of broaching the subject can all impact on the willingness of respondents to sign the form. Yet again, there can be no universal formula guaranteeing success at this stage. (Sin, 2005, p, 286).
This was not the end of the matter because even after a respondent had signed the consent form indicating willingness to proceed with the interview, it did not automatically mean that the respondent completed the interview, which involved wide ranging topics, some of which were perceived as sensitive by respondents. Furthermore, reactions to the interviews could not be anticipated as they provoked complex and diverse responses. For example,
An interview carried out with a woman of Black Caribbean origin made a particularly strong impression on members of the research team due to the considerable ethical and practical problems encountered. The interview on social network and social support had led the interviewee to disclose the fact that her son was in prison while one of her daughters has a history of mental illness. The interviewee was racked by an overwhelming sense of guilt, hopelessness and depression. She blamed herself for the problems that have beset her children
… It was clear that the interview had prompted the disclosure of sensitive issues articulated with difficulty and strong emotions. Others have written about the need to deal with emotional respondents in a sensitive manner and the need to proceed responsibly. In this case, however, despite the interviewer's attempts to steer the discussion gently towards less sensitive topics, the interviewee kept returning to the subject throughout the interview, impressing upon the interviewer that she was trying desperately to explain herself and to rationalize her perceived 'failings'. This left the interviewer in a moral quandary whereby she was uncertain about the extent to which she should allow, or even encourage, the respondent to dwell on such topics and whether she should keep trying to move the interview onto 'safer' terrain without appearing insensitive and uninterested…. (Sin, 2005, 287–88)
This experience, for Sin, 'exemplifies the inadequacy of relying simply on the signing of a consent form to have certified that respondents were fully cognizant of the demands of research.'
Furthermore, Sin noted that ethical guidelines are usually focused on protecting research participants while 'the standards for safeguarding the physical, emotional and professional well-being of researchers tend to be underdeveloped' (Sin, 2005, 287–88).
10.5.1 Covert research and consent Covert research is one area where informed consent is not possible; otherwise it would not be covert. Covert research is also seen as an area that infringes other ethical standards, including the need to be deceptive.
…covert methods violate the principles of informed consent and may invade the privacy of those being studied. Participant or non-participant observation in nonpublic spaces or experimental manipulation of research participants without their knowledge should be resorted to only where it is impossible to use other methods to obtain essential data.
The Economic and Social Research Council (ESRC, 2003, p. 21) made the exception more explicit:
Covert research may be undertaken when it may provide unique forms of evidence or where overt observation might alter the phenomenon being studied. The broad principle should be that covert research must not be undertaken lightly or routinely.
It is only justified if important issues are being addressed and if matters of social significance which cannot be uncovered in other ways are likely to be discovered.
Calvey argued that although the ESRC statement offered more options for covert research, in effect this form of research is effectively stigmatized. Calvey repeated Max Travers' (2005, p. 20) view that,
The rise of ethical review should be understood as the latest in a series of legislative and institutional measures in which the state has restricted academic freedom and exerted greater control over social scientific research... It will also result in a massive amount of new administrative work, and a whole industry around these institutions. Justified on the entirely spurious grounds that sociological research harms society unless this is properly regulated.
For Calvey, the key issue is the 'consent to what' problem. Social research is dynamic and all eventualities cannot be covered by the consent form, as the Sin (2005) example showed.
Indeed, Calvey (2008, p. 907–8) noted that some research involves a semi-covert element when there is no obvious source of consent, or when some but not all the participants are informed (Burgess, 1985). He added:
In the research setting, even when doing overt research, you can find yourself in a blurred situation with regard to confidentiality and consent. Howard Parker's (1974) ambivalent position of receiving stolen goods from the boys and his selective publication policy mirror my own feelings, with what I eventually published from the fieldwork data. Punch (1986) comments that, in large organizations, it is difficult to get the full and informed consent of everybody involved. Indeed, Punch (1986) stresses that trying to gain absolute informed consent can ironically end up terminating some research projects. What the researcher is trying to capture by investigative methods is often the unofficial view of an organization – what Shulman (1994) describes as 'dirty data'. What consent forms cover the remit to observe and document all social behaviour and conversations?
As Punch states:
…The semi-conscious tactics of the field—eavesdropping, fudging over one's purpose, simulating friendship, surreptitiously reading documents, etc.— make for good data but bad consciences. (Punch, 1986: 73)
10.5.2 Other areas of limited consent
Experimentation is also another area where informed consent is difficult because prior knowledge of the experiment may lead people to change their behaviour and invalidate the experiment. Sometimes, the subjects may not even know that they are involved in an experiment.
This whole issue of consent becomes more complicated in cyberspace. There has been a rapid increase in social scientific studies of cyberspace data, ranging from research on social media through to analyses of search engine usage. In addition, experimental studies, surveys, interviews, field observations, participant-observation have all been conducted with the use of the Internet. The problem is that in such studies 'the temporal, spatial, and sensory components of human interaction' get altered, which challenges traditional ethical concerns 'calling to question some basic assumptions about identity and one's right to keep aspects of it confidential' (Suler, 2000).
Research data that is collected via the Internet remains as an entity until such time as records are deleted. In that case it reflects any other form of recording, such as using a digital recorder to record face-to-face interviews. However, 'recording' in cyberspace might be rather more widespread including e-mail, chat logs, social media and message boards. There is then a question as to whether the respondent is aware of the extent of the recording and whether this has all been laid out as part of informed consent.
Recording of public behavior is permissible, but how do we want to define 'public' in a virtual universe filled with many thousands of rooms and channels, all varying in how easy is to get to them and how many people are openly active or secretly lurking in that space. Is it the technical limitations on access to that channel that should define privacy —or, as many researchers now believe, the person's subjective impression of confidentiality, whether or not people believe they are speaking without being heard?....
10.5.3 Revoking consent
Another issue arises when informed consent is revoked after the study has been completed. A journal that publishes case reports describing the evaluation, diagnosis and treatment of unusual cases requires parents to provide written informed consent prior to manuscript submission. A manuscript was submitted with written consent and was accepted for publication and assigned to an issue. However, just prior to publication the parents contacted the authors and revoked consent. This caused considerable concern to the publisher, who also wondered what would have happened if the revocation had occurred after publication. It raises questions about the understanding of informed consent. Do patients, or any other research subject, really understand what consent means? Do people really understand the full implications of giving consent to publish? Do patients/carers understand that once a paper is published online, it is very difficult to remove it? A journal can take down the paper, but it may have already been downloaded or printed copies may be in circulation. Hence a paper can never be removed completely from the internet.
The COPE Forum, asked to comment on this situation (COPE, 2015), stressed that patients should be made fully aware of the nature of informed consent prior to their granting consent.
The Forum agreed that consent can be revoked and that a journal should respect the wishes of a patient if they wish to revoke consent. The journal should then remove the paper from their website but leave a place marker, with a note saying that the paper has been removed and stating the reasons why.
Thus, it is important to have ensure that informed consent includes any likely publication.