Paper presented to stream on ‘The Ethics & Social Relations of Research’

Sixth International Conference on Social Science Methodology

Amsterdam - August 2004

Informed consent, gatekeepers and go-betweens

            Abstract        

            Gaining informed consent from people involved in research is   generally regarded as central to ethical research practice. Yet is it ever             possible to achieve genuine informed consent within the research             process? Certain research contexts may make this more difficult to      achieve than others, for example, whilst the power relations inherent in   some types of research may have a similar impact. This paper reports on        research funded by the UK’s Economic and Social Research Council    which seeks to identify current practice with regard to the process of    obtaining informed consent by researchers working in the areas of             childhood, youth, ageing, palliative care, mental health and learning   difficulties. These are   areas where research participants are often   constructed as potentially vulnerable within the research process. As a             consequence, their involvement in research tends to be mediated by     gatekeepers and go-betweens.

            This paper will focus on the impact of these concerns in research with             children and young people. Drawing upon the views and experiences of     researchers working in these areas, it will highlight the tensions           experienced by many researchers between a personal commitment to an         ethical framework which seeks to prioritise the agency of children and            young people (based upon notions of ‘ethical symmetry’ or ‘process consent’, for example) and the conditions imposed upon them by a      variety of gatekeepers and go-betweens, particularly within institutional             settings such as schools, which may run counter to this commitment.

            Key words: Informed consent, research ethics, children and young      people.

Introduction

Gaining informed consent from people involved in research is generally regarded as central to ethical research practice. The ethical guidelines of the British Sociological Association, for example, refer to informed consent as ‘a responsibility on the sociologist to explain as fully as possible, and in terms meaningful to participants, what the research is about, who is undertaking and financing it, why it is being undertaken and how it is to be disseminated’ (BSA, 2002, p3) . The British Educational Research Association’s recently revised ethical guidelines include a similar statement:

‘The Association takes voluntary informed consent to be the condition in which participants understand and agree to their participation without any duress, prior to the research getting underway. Researchers must take the steps necessary to ensure that all participants in the research understand the process in which they are engaged, including why their participation is necessary, how it will be used and how and to whom it will be reported. The securing of participants voluntary informed consent, before research gets underway, is considered the norm for the conduct of research’ (BERA, 2004, p6) .

Informed consent, then, is regarded by most researchers as a core element of ethical practice, alongside related concerns such as the avoidance of deception, harm and exploitation, and the principles of confidentiality and anonymity. Central to these concerns are the concepts of agency and competence; that research participants are able to express their own agency within the research process, rather than being treated merely as ‘subjects’ upon whom research is ‘done’, and that their ability to express their own agency arises from their competence at decision making. This includes their competence to make informed decisions about whether or not to participate in research, predicated upon ready access to adequate information about the research process and the uses that might be made of the data generated by their involvement.
        If asked, most researchers would probably argue that they do their utmost to comply with these aspects of ethical research practice, as part of a professional commitment to what the BERA guidelines refer to as a broader ‘ethic of respect’ for the person and for democratic values (BERA, 2004, p5). However, research is often conducted in contexts that make the securing of informed consent rather more of an aspiration than a reality, regardless of researchers’ intentions. This may be due to inequalities in status between gatekeepers, researchers and ‘the researched’, for example, or attributable to the organisational constraints of specific institutional settings. This can result in the effective denial of the individual agency of potential participants and in their construction as incompetent rather than competent within the research process.
        Research involving children and young people is particularly susceptible to some of these concerns, not least because so much research in this area is dependent on access to institutional settings such as schools, youth organisations and welfare agencies, with access to such settings dependent in turn on the goodwill of institutional gatekeepers (Morrow and Richards, 1996). This is a feature of what Qvortrup et al (1994) have referred to as the ‘institutionalisation’ of children’s and young people’s lives, whereby children spend increasing amounts of time in age-structured institutions which separate them out from ‘adult’ society and construct them as marginal to ‘adult’ concerns, and where direct access is mediated by ‘adult’ gatekeepers. Whilst negotiating institutional access via gatekeepers is in itself by no means unique to childhood and youth research, the legal and structural position of children and young people within these settings does nonetheless render the process of negotiating and obtaining informed consent particularly problematic. There are a number of reasons for this, which we will outline.
        First, gatekeepers in child- and youth-oriented institutions often base decisions regarding the potential participation of the children and young people for whom they are responsible on models of competence informed by developmental approaches which equate competency with age. In England, Wales and Northern Ireland (but not in Scotland), capacity to give consent is judged according to what has become known as ‘Gillick competency’ , based on the assumption that a child who has ‘sufficient understanding’ can indeed provide consent and that under such circumstances a parent has no right to override their child’s wishes. The notion of Gillick competency carries the potential to bolster the agency of individual children and young people, but the crucial question concerns the definition of ‘sufficient understanding’. As Masson notes,

        Those working with children are likely to make       different         decisions about a child’s capacity    dependent not only on their assessment of the    child        but also on their attitudes to childhood and treating children as autonomous’ (Masson, 2004).

Whilst the attitudes of many researchers towards childhood and children’s autonomy would lead them to argue strongly that competence cannot simply be read off from chronological age (although this is by no means always the case), in certain settings - most notably educational institutions - individual assessments of competence may be downplayed by gatekeepers in favour of notions of age-related, whole year-based assessments of competence (James et al, 1998; David et al, 2001). A gatekeeper might, for example, consider it appropriate for older age groups to participate in a research project whilst excluding those in younger age groups, regardless of the individual competence of young people in those groups (although this may well be due as much to organisational convenience as to any deep-seated reasoning.) Alternatively, institutional gatekeepers may defer to parent/s in making assessments of capacity to give consent, which raises a second set of issues in relation to legal definitions of autonomy.
        In law, children and young people are fully autonomous in very few areas of life before their 16th birthday. Institutional gatekeepers tend to defer to this lack of autonomy through making requests for parental consent with respect to the potential involvement of children in research, even if a young person might themselves be happy to be involved on the basis of their own voluntarily-given informed consent. According to Masson (2004), a researcher is not at risk of legal proceedings brought by parents merely through the involvement of an under-16 year old in social research without first seeking parental consent, although they would be so if a claim of harm were made by the young person (but not their parent/s). This implies that it is entirely legitimate to involve consenting under-16 year olds in research without first seeking parental consent, although many institutions insist that parental consent is indeed sought. Conversely, under-16 year olds have no legal powers to prevent their parents from providing personal information about them for research purposes, even though they may be unhappy about such information being given. Neither is it unusual for personal information pertaining to (identifiable) individual children and young people to be provided by workers within institutional settings without first gaining consent.
        These constraints can present enormous challenges to researchers who seek to work with children and young people within a more participatory and empowering framework, as they may well find that their own ethical positions are at odds with those of the gatekeepers with whom they must cooperate if they are to gain access. Of course, gatekeepers can and do play a valuable role in scrutinising researchers’ intent and motivation. Nonetheless, on occasions gatekeepers may display an over-protectiveness which amounts to a denial of the right of children and young people to take part in research in the first place, whilst on other occasions their actions may result in a failure to provide them with genuine opportunities to exercise their agency and competence in relation to issues of informed consent, resulting in what Homan (2001) has referred to as the gaining of ‘assumed consent’ at best (and possibly an attitude of preparedness to override consent issues').
        In this paper we seek to explore some of the tensions around the issue of informed consent which exist between researchers and the gatekeepers who often control access to the settings within which children and young people are situated. We consider some of the principles which inform the conduct of research in these areas, such as a commitment to notions of ethical symmetry and process consent, before considering the frustrations experienced by researchers when these principles are undermined, as well as some of their creative responses to these frustrations. We do so by drawing on data from our research on ‘Informed consent and the research process’, which we now outline.

‘Informed consent and the research process’: an ESRC-funded project

The research project upon which this paper draws, ‘Informed consent and the research process’, is funded by the UK’s Economic and Social Research Council under its Research Methods Programme . The project involves the analysis of researchers’ views and experiences of the meaning of informed consent; of what is regarded as good and bad practice in obtaining and managing informed consent; of the impact that different methods of gaining informed consent have on the research process; and of the impact ‘gatekeepers’ or ‘stakeholders’ have on the research that is undertaken. The rationale for undertaking the project is the increased attention that is being paid to the issue of informed consent in the research process, not least because of broad changes that are taking place in research governance and regulation in the UK and the increasingly legally-oriented frameworks within which academic and social research organisations have to work.
        Thirty one individual interviews and six focus groups were conducted by the project’s Research Fellow, Vikki Charles, each designed to elicit information from researchers relating to their views and practices around gaining informed consent from people involved in their research. We have also received email submissions from researchers who have expressed interest in the research. The researchers contacted for these purposes have all had experience of collecting, analysing and reporting on data relating to a number of groups that are often constructed as potentially vulnerable within the research process and where access tends to be mediated by gatekeepers and go-betweens: these include researchers working with children and young people, but also those working with older people, people receiving palliative care, and people with learning difficulties and mental health problems. The conduct of research in these particular areas is often problematised because of the assumed vulnerability of members of these groups within the research process. Ethical dilemmas in research are by no means absent in research with other sub-populations, but are arguably writ large in these specific fields, highlighted for example by the legal requirements placed on health researchers to submit their work to the scrutiny of research ethics committees.
         Having provided a brief overview of our research and its context, we now turn now to a consideration of some of the principles which informed the research practice of our respondents in relation to notions of agency and competency and the notion of process consent. We then consider some of the difficulties our respondents regularly encountered in negotiating informed consent via institutional gatekeepers, in terms of over-protectiveness on the one hand and the danger of working with assumed rather than informed consent on the other.

Constructing agency and competency in childhood & youth research

As we have noted, our choice of research areas was initially influenced by their construction as areas of potential vulnerability within the research process. Interestingly, the vulnerability of the sub-populations concerned is often viewed as inherent and self-evident, yet it is clear that not all researchers share this perspective, in particular those working with children. Many childhood researchers are increasingly keen not to treat children any differently from other groups within the research process just because they are children, although as we noted above they are often denied agency by gatekeepers within the research process for precisely this reason.
        Christiansen and Prout (2002) provide a useful overview of changing discourses on research with children. They argue that the recent emergence of a distinct ‘childhood studies’ agenda has led to an upsurge in empirical studies of children’s lives, resulting in the widespread adoption of innovative methods of investigation and a burgeoning of methodological discussion. Central to these discussions have been arguments concerning the role of children as social actors, which in turn raises important ethical questions about their involvement in social research. Christiansen and Prout note the discursive shift within childhood studies from viewing children as objects of research, based on assumptions of dependency, towards a view which stresses their competency and agency, often as co-participants in the research process. Such a view grants ‘central and autonomous conceptual status’ (p.481) to children and refuses to take pre-existing distinctions between adults and children for granted. Key to this shift is the adoption of the notion of ‘ethical symmetry’ between children and adults:

        By this, we mean that the researcher takes as his or       her starting point the view that the ethical         relationship between researcher and informant is the       same whether he or she conducts research with         adults or children… any difference between carrying       out research with children or with adults should be    allowed to arise from this starting point, according to   the concrete situation of children, rather than being         assumed in advance (Christiansen and Prout,        2002,       p.482 - emphasis in original).

This perspective, then, compels researchers to reject notions of children’s essential vulnerability and/or incompetence, and to enter into ‘a dialogue that recognises commonality but also honours difference’ (p.480).
        Similar concerns face researchers working with young people in their mid- to late-teens. The social construction of youth, in common with that of childhood, generates a powerful assumption of distinction between ‘adults’ and those who are ‘not adults’  (or at least ‘not yet adults’) and who are therefore deemed to require advice and guidance from adults (Wyn and White, 1997). This is a position which assigns young people to a position of relative powerlessness, and which many youth researchers accordingly seek to challenge. However, whilst discussions around this theme are commonplace in theoretical debates concerning the social construction of youth, they are often less apparent - or perhaps taken for granted - within methodological discussions of youth research. This is despite the fact that a great deal of empirical work with older teenagers is still conducted in institutional settings and/or governed by the requirements of gatekeepers. For these reasons at least, a commitment to ethical symmetry seems equally appropriate in research involving older teens as in research with young children, although these concerns were less frequently voiced by youth as opposed to childhood researchers involved in our own study, possibly because the competence and agency of their research participants is regarded as rather more self-evident by researchers and gatekeepers working with older groups.
        It is fair to say that the position of all of the researchers involved in our study was one that acknowledged the agency of children and young people within the research process, albeit to varying degrees. It was also a position that tended to acknowledge the relative powerlessness of children and young people vis-a-vis adults within the research process. Nonetheless, there was by no means a common view amongst our respondents on the boundaries of young people’s agency and competence. Some respondents adopted a model which had clear echoes of Christiansen and Prout's model of ethical symmetry, although none used that specific term. One researcher, for example, described her view of children's competency in the following terms and linked it to broader issues of children's relative powerless within institutional contexts:

        I have an understanding of children as competent to      take part in the research, as competent to make        decisions about taking part in the research but I also   have an understanding, and that's part of a care-        based approach, of children in relational context, as      everybody in relational context... I would say this is a person in relationships with others where power is         involved and where you're going into a situation that         existed prior to your, you entering as a researcher and   persists after you entered it as a researcher and you    need to be respectful of that. (I17: 3)

Others, whilst not wishing to distinguish between ethical concerns whether involving children, young people or adults, nonetheless chose to emphasise the importance of acknowledging age-specific competencies. In other words, they sought to engage with similar ethical concerns to researchers working with adults, but acknowledged developmental differences through the adoption of what they regarded to be an age-specific research design, whether that was in relation to the actual processes of gaining consent or the choice of research methods:

        You go into a year group and they're not all going to       have the same         level of competencies and that         informed consent therefore has to be targeted for the    children, for the child you're speaking to and for     them to understand, it’s them that has to be informed     so that is, is what you're working with, that the     interviewee and the potential participant has to be         informed, fully informed and so you work       around     them not around yourself at the centre. (I21: 1)

        There's using a sort of child-focussed approach, so, of    which like informed consent would be a major part,        which is where it's just generally good practice in        researching children and, so it's about, you know,       ensuring the voice of the child is heard, treating it with equal respect. It’s sort of ensuring informed      consent, ensuring access to the research information,      a bit like good research with adults but, historically       research with children wasn't done like that so, and         using methods that are age-appropriate, so visual methods, vis-a-vis, all those sorts of things, you know,         so participatory research. (I4)

The need to use age-specific research methods was mentioned by a number of respondents, and ranged from the use of drawings and stories through to a preference for group interviews over individual interviews. One researcher noted, for example, that she had experienced difficulty in recruiting pupils to take part in one-to-one interviews, but when she provided the option of being interviewed with a friend her response rates had soared. The knowledge held by ‘secondary gatekeepers' such as teachers, youth workers and social workers was acknowledged by some respondents as invaluable in allowing research design to be tailored to the needs of specific groups, although as we shall see others were more sceptical about the value of seeking such advice from those who had day to day responsibility in institutional settings.
        A number of other researchers, however, felt that the ethicalissues raised by researching children were indeed distinct from those raised by researching adults, and that the differences that needed to be taken into account were not merely confined to the use of age-appropriate research methods. One researcher, for example, argued strongly for child-specific ethical guidelines for researchers, as she felt that generic guidelines, such as those produced by the British Sociological Association or the UK's Social Research Association, were too general. She acknowledged that her view was by no means shared by all researchers, though:

        There are others that would not take that view of    course, there are others, doing research with children       is not in theory different than doing it with adults   because its all about respect whoever it is...  (3)

Another researcher was adamant that some children were simply 'too young to understand' what was involved in taking part in research, based not on notions of individual competence but of age-related competence:

        I personally would, would not carry out group         interviews with, with young people in primary schools,    I would only start at secondary level, but I must admit     that, you know, there are occasions I think where         some of my colleagues may choose to interview       younger people. (I13)

In this particular case, however, she argued that this was more to do with the type of topics that her research tended to address, notably pupil responses to new policy initiatives, and she felt that younger children might find it harder to engage with such issues than secondary school age children.
        Relatedly, the extent to which researchers should seek to get down to a child or young person's level was raised as an issue by a few of our respondents. One, for example, noted that she had once spent a period of fieldwork playing with a young child on a seesaw 'because that's what she (the child) wanted to do', and felt that this had been appropriate activity even though she had not actually managed to do what she had set out to do in research terms. Importantly, she also felt that this was the child's way of exercising dissent rather than consent. Another of our respondents, however, whilst having some sympathy for the need to get alongside children, also felt that such behaviour was potentially problematic and could be construed as a wrong-headed attempt to downplay the competencies of adults:

        There sort of lots of things in the researching childhood literature         about how, you know, you adopt     the least adult position.. and some         of that stuff kind      of, there's a way in which I think you do, you do have         to do it, but there's another way in which it's incredibly         irritating and patronising because, you   know, it’s assuming that kids can't bloody well tell the difference... There's a way in which you do have to do    that because you have to try to relate to children in        their own terms. But I think you have to be careful to,    to remember that actually the children do know that     you're not a child. (I26: 6-7)

Interestingly, this same researcher turned the issue of competence to provide informed consent on its head, by arguing that adults are often equally unable to grasp the full significance of research participation:

        And I mean the problem I think the problem about,        about consent         of children is in, in some ways is not       very different from the problem of consent with adults because I think that, that actually the adults      we speak to also don’t really understand what they’re     giving consent    to. (I26: 1)

Along with several other respondents, she felt that researchers should not therefore assume that ‘adult’ status automatically confers insight into the mysteries of the research process.
        A second strong theme underpinning debates concerning informed consent and childhood/youth research pertains to notions of ‘process consent’. Process consent is a term often used to describe the idea of consent as an ongoing concern within the research process, rather than a once and for all achievement at the beginning of a researcher’s contact with a child or young person. It is an acknowledgement that research participants have the right to withdraw at any time and that consent given today may not mean that it is given tomorrow, although it may well mean that it will be given the day after tomorrow: in other words, consent should be negotiated as an ongoing concern, and should not be assumed on the basis of initial consent only. A number of our respondents described processes such as the following, whereby children were given the opportunity to exercise some degree of control over their involvement:

        We'll have told them in the initial contact that they         can change their minds, that they can stop the interview at any point, they can stop the interview for     a short period and restart again or they can stop it         for that day and we'll come back another day or they   can stop the interview for good and say they've        changed their minds, they don't want to do it. (I1: 6)

This extended to giving children practice in saying 'stop', and it was noted that children did indeed exercise this right, although sometimes it was more in relation to a desire to stop talking about a particular subject rather than wishing to terminate the interview completely. However, not all young people would feel comfortable exercising such a right, given power inequalities between researchers and younger respondents, not to mention conflicting interests between seeking to be ethical on the one hand and seeking to secure research data on the other. One researcher described this tension well:

        I mean it’s very difficult for anyone to stop an interview midway or, but, you know, it’s particularly       difficult for children and young people when there's      sort of the power issue and it's, I mean as I say       whoever you research but I think particularly with      children, and so the onus is really on the researcher     to be completely attuned and you do, you know, you         have to weigh up the fact that it's a real bugger if you     have to stop an interview halfway through (laughs),         you know it is,         especially if you've travelled a long way       or whatever (I4:?)

Her view was that the onus was on researchers to make involvement in research interesting for young people, and if they were still not engaged, then to ask them if they want to stop the research. In longitudinal research, these problems were often writ large. One researcher noted, for example, some of the difficulties experienced in a project which was carried out over the course of a school year, with interviews being held twice a term. She felt that this had raised two sets of problems which the research team had not really addressed satisfactorily: first, that some children were unhappy about missing lessons as time went on; and second, that lower achieving children within the sample found the interview 'more uncomfortable' than higher achieving children. Different researchers have different ways of dealing with this sort of difficulty. One respondent talked about research she had conducted on young people’s involvement in social action groups, including peer education groups and a lesbian and gay support group, which had involved observation over an 18 month period. Her strategy was to ask the young people to meet in her absence to discuss the research process and to then provide feedback to the research team. She acknowledged that most of the groups were perhaps unusually well-placed to do this:

        So I think all the groups were quite powerful in that       respect, in that they always knew that the researcher      was there with their consent, I         suppose because they      were social action groups as well they were very much        used to being in charge and taking, taking control and   the facilitators were very good at saying, 'look this        issue has come up, you know, what are you going to    do about it?, sort of leaving, leaving the decision   making to them (I6)

Two other respondents, however, spoke of a school-based project which had extended over two school years and of their reluctance to annoy respondents by continually asking for consent:

        And there was of course the other issue of, we were        continuing with the research over the next year so    there was, there was also a difficulty about whether   we were sullying some of the relationships we had by    the constant pestering for further help with these sort    of basic things.
        'You've already had the consent off me, why do you        want it again?'         and they were getting a bit pissed off       actually.
        (Focus group with educational researchers)

Ensuring ongoing consent was not an easy task, then, and was a source of potential tension for researchers who sought to act within what they considered to be an ethical framework for their research with children and young people. Having considered the importance of notions of competency and agency and of process consent and the ways in which they have informed the research philosophies of many of our respondents, we now turn to consider the realities of conducting research in settings largely dependent on gatekeeper-mediated access. There seem to be two main sets of concerns here; first, those relating to the potential over-protectiveness of gatekeepers, and second, those relating to Homan’s notion of ‘assumed consent’ (Homan, 2001).

Working with gatekeepers in child/youth-orientated institutional settings

(i) Denying consent

Within institutional settings, gatekeepers are frequently charged with the responsibility for making decisions on behalf of the children and young people in their care. Christiansen and Prout note, however, that they are rarely seen as having any duty to consult with those in their charge: ‘On the contrary, their adult status and relationship to the child are seen, in normal circumstances, as the guarantors of children’s welfare’ (2002, p.480). Whilst this can rightly act to protect those within their charge, Alderson (2004) points out that at times it may also ‘silence and exclude them’. Nonetheless, the assent or refusal of the gatekeeper is often given as a proxy for the assent or refusal of potential research participants, without actually consulting with them first.
        The decision of a gatekeeper to deny a researcher access may of course be based on any number of reasons, from pressures of time and institutional inconvenience, through to an unwillingness to open up quasi-private worlds to public scrutiny, or the actual or assumed inappropriateness of the proposed research topic and/or its methods. Of course, it is only proper that gatekeepers act to protect their charges from unnecessary and intrusive research (including, as one respondent noted, from the activities of unscrupulous researchers whose attitude was 'we need to get them' and saw schools as easy targets for gaining large sample sizes). Commenting on this protective role, one of our respondents praised the sensitive manner in which gatekeepers of young people in care and gatekeepers of a community arts project had arranged access for her research in the past, ensuring that the most vulnerable young people were protected throughout the process. However, whether or not someone should be able to participate in research is a decision not always best made by the gatekeeper, as one of our respondents with experience of conducting research with children in social services settings argued:

        Your access to the person is going to be determined by   who, who's got the right to give you access or can get      you access and who's got         the legal right to agree to       you including them in your research. So that may be    their parent or their primary carer, it may be a social      worker depending on the situation. So that's always   going to be the         person, the kind of person who's the    first port of call, but that may not be the person who      you feel is very good at protecting their rights...  (Int 1,   4)

Another researcher with experience of social services settings expressed similar concerns:

        It’s hard to get the children sometimes, and that can      be just, they can be very paternalistic and very    protective of children, they say, 'oh no, this child's       been involved, oh no, you can't do that... they do tend    to be very paternalistic I must say, much more so    than the child themselves would want them to be.   Sometimes people say that and then perhaps we         might be in contact with the child for other reasons        and we find it’s perfectly okay (I3:5)
Other respondents noted that gatekeepers often denied access on the basis of assumptions regarding a lack of competence to give informed consent. This too was contested in some cases, with one researcher giving the example of a child with disabilities who was judged as being unable to give consent yet who, through the intervention of a frequent visitor, was able to express their desire to participate. A similar example was given by another respondent of a child judged to be ESN (educationally sub-normal). In some cases, then, a child’s key worker may actually underestimate levels of competence, thus denying participation. This same researcher gave the more positive example of negotiating access to a group of young people with learning difficulties in order to talk to them about the research without the key worker being present and thus influencing their decisions.
        In the view of one of the researchers who worked frequently within a social services setting, school gatekeepers were less likely than social services gatekeepers to issue blanket refusals and were rather more likely to pass the decision to parents, albeit often in order to cover their own backs:

        I think the schools are concerned about, the schools      are more likely         to see the parents as having rights rather than the children and they would be much        more concerned about what the parent would say if         their child was answering questions and they didn't       know about it         (I3: 6).  

Indeed, it is not unusual for a gatekeeper to allow access in principle, but then to delegate to parents and guardians the ultimate decision of whether or not a child or young person can participate. We have noted the legal position above, but in practice an institution is unlikely to override the wishes of a parent, even if a child wishes nonetheless to participate. Respondents provided us with several examples of such instances, including an account of a young boy who forged his parent’s signature on a consent form because he was so keen to participate. Another respondent gave a similar example in relation to one of her doctoral students. In this case, a child was described as being ‘desperate’ to take part in a particular research activity, yet parental consent had been withheld. The researcher decided to include the child in the actual research activity, but not to include their account in the write-up,  'which is of course what the child really wanted to do, wanted to be part of the activity', not the write-up.
        By no means all schools insist on parental consent; some feel that merely informing parents is sufficient without seeking their active opt-in or opt-out, whereas others are much stricter, and this is likely to vary from school to school within the same project, as was made clear in a multi-school project where a researcher noted that,

        Some schools felt that if we were doing the individual     or joint interviews in the school then the parents        could be informed that that was happening but they didn't actually need their definite consent. Other         schools felt that, that each parent had to say 'yes my      child can do this', and it’s to do with the history of      the school and their         relationship with parents, so that    we, we worked with context and that's the same as    when we're going to interview children in families. (I17: 2)

Several respondents raised an important  issue concerning the appropriateness or otherwise of gatekeepers seeking parental consent in the case of particularly sensitive research topics, as young people may not want their parents to know about their involvement (see Valentine et al, 2001). Examples included research on drug use and on HIV, whilst one respondent gave an example of research conducted by a PhD student exploring young gay men's experiences of schooling which portrayed this dilemma particularly starkly:

        ...the ethics committee of his university... said he had    to get consent         from parents. Well, you know, in my       view the, this ethics committee        was asking him to do       something completely unethical which was to ‘out’ his      young men who he would have contacted through         clubs and         what have you, you know, not through the      school, to their parents so he, you know, he, he      actually couldn't do that research and in the end what        he did was, he interviewed older men about, he asked       them, you know, in their 20s who or later, you know,     above 18         anyway, about their school experiences   (I26: 2)

This particular interviewee always sought to gain parental consent in research with under-16s, sometimes because this was anyway a requirement of the school, but more often than not for her own peace of mind:

        (B)ecause I don’t want it to come back and bite me         and, and because, well I think actually times are   changing and now you would always have to give consent and, you know., when I started this work I         wouldn't be, I wouldn't for example have needed     criminal records clearance which now I do and, and so     some of that is about changing times. But I also think     because although I think the children have the         primary right in what they do and don’t do, I think         parents do have, you know, children shouldn't be put      in the position where they're being asked to do     something if their parents are very uncomfortable         (about it). (26: 3)

In most cases, however, researchers were unable to influence an organisation’s decision whether or not to ask parents to give their own consent in the first instance. Most had to be content with leaving this up to the institution in question. One respondent noted that it was the policy of her own institution to always comply with an organisation’s requirements in this regard, but where they didn’t have a strict policy to always respect the young person’s right to opt in or out. She recognised the tension that existed here, though, in relation to researching under-16 year olds and the insistence of many institutions that parental consent be sought in such cases:

        And in terms of a young people's sort of rights agenda    I personally don't feel that that's appropriate, I can't see how we can do research into young people's         rights, rights and engagement in social action and then say, you know, if they're 17 they can choose to       participate, if they're 16 they can't. So that's the sort    of stance that we take but often it is out of our hands        in that schools and other organisations will say 'we        need parental consent' or 'we don't’ (I6:?)

Having considered some of the obstacles to allowing children to give consent in the first instance, through the over-protectiveness of gatekeepers or through delegating consent to parents, we now turn to the flipside of this issue and consider ways in which children and young people’s consent may be assumed on the part of gatekeepers rather than actively sought.
       
(ii) Assumed consent

It was noted above that child- and youth-oriented institutions can often be seen as easy targets for researchers seeking to maximise response rates. This is perhaps most often seen in the case of schools, assuming access is given in the first instance. As one of the participants in the education focus group noted, ‘I mean that's the attraction people say of doing research in schools because they can't, you've got them in the classroom’. Having secured the consent of the primary gatekeeper, it is not unusual for children’s and young people’s consent to then be assumed within what follows. Many respondents spoke of occasions when they had not been given sufficient time – or any time – to fully explain the purpose of the research and what it would involve, and that informed consent was therefore denied even if children were nonetheless able to choose whether or not to participate. One spoke of conducting research in youth clubs, for example, where they were effectively parachuted in for the evening without sufficient time to fully explain the research aims or to give young people time to think carefully about whether or not to get involved. In another example, a school had in fact sent out a letter to parents seeking consent for pupils to take part in an attainment test for research purposes, but had not allowed sufficient time for the forms to be returned before the test. In the event, all pupils took the test, and the data on pupils for whom consent was not secured were subsequently excluded from the analysis.
        Several respondents spoke critically of school-based research where children were not only expected to participate, but where data collection was carried out under examination conditions, or at least within a pedagogical model where they were expected to participate as part of the educational process (see David et al, 2001). As such, processes of research come to be understood within an educational context, which in turn informs children’s and young people’s understanding of research and their decisions whether or not to participate; for example, completion of a questionnaire may be indistin-guishable from routine classroom assignments, with little space for opting out other than non-participation or the deliberate spoiling of the questionnaire. Many respondents expressed their unease with these sorts of assumptions and attendant practices, including one who said that her research organisation would not work with schools where children’s rights to opt out were not honoured. In other instances, researchers tried hard to put children’s rights to opt in and out on the agenda, but this was not always possible in practice:

        We always work with teachers and schools and      explain that only the pupils who wish to receive         information or have a meeting should take part and   that, and that doesn't always happen at all I don’t think or, you know, often schools aren't, don’t sort of    work within that ethos always or, you know, just very    busy and people often just say ‘oh well, its those 5         individuals, I'll tell them they're going off’. And we have had that quite often where a group of pupils have turned up in a room and have absolutely no idea, they    haven't been given the information sheets that we have asked to be given out and haven't been told what   they're there for and you know I just think the only       thing we can do is keep working with our key contact     within a school or within an organisation and explain    that it is really important that        young people know why they're there and can opt out of a meeting       with a      researcher if they, if they want to… it is very difficult I think in, you know, in a lot of organisations, particularly big, busy organisations to make sure that      individual young people are respected in that sense,   so it doesn't always work but we try as hard as we can to do it (I6: 3).

Nonetheless, given the pressures faced by researchers to secure access and carry out fieldwork, most felt that they had little choice but to work with the constraints imposed by any given organisation. Even where children and young people appear to have been given a choice as to whether to participate, it was noted by several respondents that it was important to bear in mind that saying ‘no’ might actually be a very brave act in an institutional context. Consent may, then, be based on little more than a desire to please, or even a fear of the consequences of not being seen to be cooperative.
        However, a variety of imaginative solutions to these sorts of issues emerged in our interviews. One respondent spoke of the ability of children to deny consent by remaining silent in focus groups once having been selected, whilst others argued that they were happy for respondents to write ‘nonsense’ in response to questionnaires, as a way of exercising what Edwards and Alldred (1999) have referred to as ‘informed dissent’. Aware that children and young people may well find it difficult to voice dissent even if given the choice, perhaps through not wanting to be seen by those in authority to be uncooperative, others spoke of practices such as the inclusion of a word search puzzle or similar on the last page of a questionnaire which young people could choose to complete instead of completing the questionnaire; they would appear to be busy, and teachers, for example, need not know that they were not in fact contributing to the research. Another example related to young people turning up to interviews who had probably only really given consent to getting out of the classroom and who were in fact less than enthusiastic about taking part in the research. The researcher in question had taken to providing tabloid newspapers, which she and her respondent could sit and read for the allotted period of time before the young person had to return to the classroom. Others gave respondents the opportunity to talk about anything they wished if it became apparent that they were not keen to engage with the research topic. The example provided earlier of the researcher playing with a small child on a seesaw rather than engaging in a photo elicitation exercise could also be viewed as an example of giving children the right to exercise dissent.
               

Conclusions

In this paper we have explored some of the tensions experienced by childhood and youth researchers in relation to the negotiation of informed consent in research settings governed by institutional gatekeepers. First, we focused on researchers’ views regarding the agency of children and young people within the research process and their competency to give consent, and the emphasis placed by many researchers on the importance of securing ongoing process consent, rather than seeing consent as a one-off activity. We then considered some of the frustrations experienced by researchers when seeking to work with gatekeepers, situations where their own ethical principles were often undermined or met with some degree of resistance. These frustrations were explored around two key themes: the denial of consent on the one hand and the assumption of consent on the other.
        Amongst our respondents there was a fairly high level of consensus concerning the importance of prioritising children’s and young people’s rights over those of gatekeepers and researchers within the research process. However, most could provide examples of what they considered to be bad ethical practice in relation to research in these areas, in particular in relation to a denial of young people’s rights to exercise consent in school-based settings. As one researcher noted, it was hardly surprising if organisations were inconsistent about practices in relation to consent as 'the research world isn't consistent', with mixed messages being sent out to participating institutions as a consequence. In the ‘real world’ in which we conduct our research, however, researchers remain dependent on the goodwill of gatekeepers to a very large extent. Whilst working within these constraints, and not always wanting to condone the practices imposed by gatekeepers, many individual researchers nonetheless appear able to provide resistant spaces, allowing young people and children to exercise the rights to opt in and out which are effectively denied them by gatekeepers or even at times by research organisations and project directors.
        We finish with a quotation from Homan (2001) which cuts to the heart of this issue:

        Gatekeepers called upon to grant access should not       act without considering carefully the reason why that       entitlement is being withheld from the subjects     themselves’ (Homan, 2001, p.342).

In this particular context, Homan is presenting an argument against allowing gatekeepers to unproblematically allow access, but the same point could equally be made regarding the denial of access. And equally the point should be applied to researchers’ own practice in the absence of gatekeepers.

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Acknowledgements: The project upon which this paper is based, ‘Informed consent and the research process’, is funded by the UK’s Economic and Social Research Council, Award no. H333250034. We are extremely grateful to all the researchers who have given of their time to contribute to the project.