This arises because success may depend on keeping response bias to a minimum or to avoid causing distress in cases where the study focus encompasses an investigation of responses to experiences of diagnosis and prognosis of which participants may be unaware. Even within a single research interview, neither investigator nor participant can fully anticipate the content or outcome of the encounter, or what new topics and insights may emerge.
Consequently, it is hard to be highly specific in giving information about the study, or indicating precisely what research participants are signing up to [ 9 , ]. As indicated above, qualitative research engages with participants on the basis of ongoing, process consent.
Especially with participants from marginal, stigmatized or deviant populations the requirement for signed consent may be experienced as unwelcome, inappropriate or even coercive, and can impair the development of trust between researcher and participants [ 9 , 28 , 30 , 85 , , , ]. The research enterprise depends on trust based on the promise of confidentiality.
This has traditionally been a core commitment of qualitative research. It is a primary means of protecting respondents from any adverse consequences of research participation, and also a precondition of the meaningful exploration of many difficult and sensitive areas of human activity and experience, especially involving marginal and stigmatized social groups [ 9 ].
This commitment can give rise to controversial and uncomfortable situations beyond easy compromise or resolution. However, the importance of maintaining trust as an underpinning principle of service delivery is recognised in clinical practice and public health, for example in relation to the concealment of identity of doctors affected by HIV, or HIV patients known to be engaging in unprotected sex [ , ]. It seems reasonable to propose that similar commitments should be honoured in relation to research participation.
In principle, and as stipulated in the British Sociological Association and Association of Social Anthropologists statements of ethical guidelines, confidentiality of research participants should only be broken in exceptional circumstances, where issues of public interest are clearly raised [ , ]. In practice, and in view of the uncertainties about current legislation and risk aversion of regulatory bodies, a much more routine and formulaic application has evolved [ 9 , 10 , 45 , 76 , ].
These impose an obligation on researchers to break participant confidentiality in the event that they reveal what is judged to be evidence of illegal activity or actual or potential harm to themselves or others [ - ]. The routine requirement to offer participants only qualified or partial confidentiality effectively undermines the basis on which much research involving deviant or marginal populations and sensitive topics may be successfully undertaken.
The nature and purpose of research should not be confounded with the practice of health care. This is not to say that circumstances may never arise where a researcher feels that it is necessary to break confidentiality. Researchers are clearly not exempt from the obligation to observe legal and regulatory requirements.
However, the occurrence of ethical dilemmas in the field calls for deliberative judgement which can be informed and guided but not resolved by normative procedural rules. Rather than resort to formulas and avoidance, there needs to be acknowledgement and acceptance of the intrinsically difficult nature of ethical issues. These do not lend themselves to easy or sometimes even any satisfactory solution.
It may not be possible to support the best interests of all participants. The case is clear for relaxing the protectionist and paternalistic stance of current regulatory processes in relation to people taking part in qualitative studies where capacity is not at issue. People can make their own decisions about whether a researcher is trustworthy, if they wish to participate, how they wish to engage in the study and they can withdraw at will.
Studies where this is not the case are more problematic, e. However, further knowledge is badly needed to increase understanding and improve services and care for such vulnerable and frequently under-researched groups.
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Indeed, it has been argued that current restrictions applying to the inclusion of vulnerable subjects in research constitute actual harm, rather than a benefit or protection, on two counts. Firstly, such groups are denied the benefits which research can confer. Second, in being excluded from the opportunity to take part in research, they are denied the chance to contribute as social agents and to have a voice in the development of policies and services relevant to their condition [ 4 , 42 , 49 , ]. The bioethical principle of autonomy requires that research participation should be voluntary, informed and undertaken by persons with capacity to make independent decisions.
This formally excludes all persons lacking such capacity from involvement in research. To get around this restriction, a utilitarian fudge can be brought into play. Subject to favourable ethical review, persons lacking capacity may be included in research on the basis of consultation and advice either with a nominated or designated proxy often a relative or, where these are not available, an independent advocate [ 39 , , , ]. The substituted judgement of such proxy agents may be based on inaccurate or no prior knowledge of the patient or his wishes.
These could, in any case, be impossible to determine. It is not usual for individuals to hold and share clearly formulated anticipatory wishes about involvement in research in the event of future incapacity. Even where these are in place, it is a moot point how well future preferences relating to a drastically altered state of cognitive and functional capacity can be anticipated in advance [ ].
In some studies the complex processes involved in obtaining consultee opinions may not pose a problem. In any case, where research involves interventions which are intrusive or entail risk of actual harm, the interests of vulnerable subjects must be safeguarded and participation subject to careful consideration and review.
This is the intent and appropriate purpose of current legislation and formal ethical review. In contrast, qualitative studies rarely if ever involve tangible or material threat or harm to participants. However, research occurring in naturalistic settings, particularly where observation is involved, often simply cannot fit within the slow and cumbersome pace of governance bureaucracy: the real world moves too fast.
The issue here is the extent to which we are prepared to engage with the ethical dilemmas which may arise in carrying out qualitative research and accept that these may not always be resolvable within the current bioethical framework of research governance. Within the bioethical framework, individual interests trump those of science and society [ 45 , ]. However, to undertake meaningful qualitative research, a trade off needs sometimes to be made in balancing the interests of the individual against those of the group, the potential intrusion of research against its benefits.
This needs to be acknowledged and accepted [ 19 , 45 , ]. The standard formulas and oversimplified rules prescribed for research conduct appear to offer solutions whilst eliding the real issues, from the quotidian to the exceptional, to be encountered in real world research. Far from promoting ethical research it has been argued that the rigidity of procedural ethics is deskilling. On the ground immediate judgements must often be made about unanticipated events and opportunities which fall outside the formal specification of how a study should be conducted [ ].
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For example: researchers may inadvertently be presented with personal identifiable data that they are supposed not to access without prior consent. In observational studies, staff may omit to provide potential respondents with information about the study. The researcher must choose whether it is better to provide this directly to ensure that the information is supplied, or observe the requirement that researchers should not make direct initial contact with participants. In practice it may be impossible to ensure that information has been distributed to patients during admission to a ward.
It can be hard to know in advance how many respondents should be recruited. If the specified target is substantially exceeded, or it emerges that representation from different groups is required, data collection must be paused or disrupted pending further approvals of protocol amendments by the REC and NHS research and development departments. This process usually takes several months, with adverse knock on consequences for the completion of the study within schedule.
Meanwhile the chance to include specific individuals or groups may have passed, and the opportunity lost. People may offer their participation and cooperation but on their own terms. For example, they may not want to sign consent, or may be willing to talk on the spot but not to arrange a formal meeting in the future.
The researcher cannot know in advance if they are going to make a brief or more substantial contribution to the interview.
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Nor can she request that they should leave the room. Gradually, it emerges that the discussion has turned into a joint interview.
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The researcher is then caught between the formal - but in this case gratuitously disruptive - requirement to go through the process of seeking written consent and risk jeopardizing the interview by violating the social rules of the encounter. This shifts the focus away from formal processes of external regulation towards an increased reliance on - and recognition of - the skill, training and trustworthiness of individual researchers [ 18 , ].
This seeks to remedy the shortcomings of an overly abstract nature of bioethical principalism by engaging with how moral values and dilemmas are embedded and resolved in real world experience and practice. Ethical deliberation would then be informed by an understanding of how and why decisions are made in specific contexts, rather than simply specifying a priori rules for how they should be made.
Similarly, a true respect for, and operationalisation of, autonomy would start from an understanding of how research participants understand and value autonomy and modify governance requirements accordingly [ 99 , - ]. This is not to say that research ethics is then left rudderless on a sea of relativism and descriptive subjectivity, nor that researchers should not be subject to scrutiny and supervision. The current difficulty in obtaining ethical approval for qualitative studies of sensitive issues or involving vulnerable populations discourages researchers from attempting to carry out such work.
This constitutes a form of censorship, limiting and directing the kinds of research questions that may be asked and how they may be investigated [ 4 , 5 , 9 , 16 , , ]. In consequence, vulnerable patient groups are excluded from research and the voice which this may give them to apply leverage in improving care [ 49 , , ]. Misplaced protectionism on the part of ethical committees in closing research to vulnerable groups may constitute a harm rather than intended benefit [ 4 , 42 ].
The conditions which apply to gaining access to personal identifiable data and the requirements for informed consent impose complex constraints on accessing and recruiting participants.
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Current legislation contains enabling provisions for these restrictions to be overcome in order that research may be undertaken. In practice, however, the conservative and risk aversive culture of ethical review means that the procedures required to obtain such permissions are complex and protracted to the extent of deterring all but the most determined researcher, and perhaps the few who have unlimited time required to pursue the endeavour [ 11 , 19 , 45 , 69 ].
The upshot is that qualitative researchers and others too, but it is qualitative research that I am primarily concerned with here have become burdened with a system of ethical review that is cumbersome, inappropriate and restrictive to the point that it is making research, particularly in relation to vulnerable populations and sensitive topics, increasingly hard and sometimes even impossible.
by Hammersley, Martyn; Traianou, Anna
The need for some form of external regulation and ethical review is not contested, but this should be proportionate to the risks involved and conducted with sufficient expertise. The potential harms of qualitative research should be acknowledged, for example: intrusion into personal privacy, arousal of distress, embarrassment, or breaches in confidentiality. However, these are rare, relatively minor and commensurate with the normal vagaries of everyday life.