confidentiality for whom?

Sm. Sri. Med. Vol. 32, No. 3, pp. 279-286, 1991 Printed in Great Britain. All rights reserved

0277-9536191 53.00 + 0.00 copyright 0 1991 Pergamon Press plc

CONFIDENTIALITY FOR WHOM?

IAN ROBINSON

Department of Human Sciences, Brunei, The University of West London. Uxbridge. Middlesex UB8 3PH, England

Abstract-Confidentiality has been argued to be a cornerstone both of medical and social research encounters, particularly because of the protection it offers for patients and informants. In practice the idea of confidentiality is fractured. Professional interests in the organisation of medical work, and concerns for the collective interest amongst social researchers may lead to individual confidentiality being undermined. In addition discrepancies in the ethical positions and practices of social researchers and those in biomedicine may produce further problems for the maintenance of confidentiality.

Key words-ethics, confidentiality, medical practice, social research

INTERPRETING CONFIDENTIALITY IN ENCOUNTERS IN SOCIAL RESEARCH AND MEDICAL PRACTICE

The role of confidentiality is frequently seen to be both substantial and in many ways the ethical comer- stone of professional behaviour in social research [l] and the practice of medicine [2]. Conventional expla- nations of the virtues of confidentiality, particularly by those who are practitioners, stress its role as a major protection for patients or informants.

Although confidentiality in the clinical encounter between doctor and patient has an unclear legal basis [3], a benign and patient centred interpretation suggests that confidentiality is necessary because the effectiveness of such encounters depends on the revelation of patients’ secrets. Any relationship based on the revelation of such secrets is privileged for those into whose hands these secrets are given [4]. Clinical encounters are additionally privileged because of the vulnerability of the patient in the process of revelation, and because of an implied and particular contract with the doctor-in which secrets are ren- dered in exchange for potential, or actual, medical help. Thus, coming full circle, ethically circum- scribing the clinical encounter with confidentiality is ostensibly a way of ensuring the patients’ secrets are privileged and confined. In Gillon’s words: “Essentially confidentiality is respect for people’s secrets” [S].

For social scientists with their more diverse professional base a benign and informant centred view is not so clearly stated. A neat parallel cannot be easily made between the relationship of doctors and their patients, and social scientists and their informants. However, the ethical centrepiece of the relationship of the social scientist with an informant is still the idea of confidentiality. The provision of a conducive social environment to the revelation of personal secrets is as much the aim of the social scientist, as it is of the doctor.

Because social scientists are interested principally in human behaviour, they are attracted to the study of activities that many persons consider private.... In addition, the methods employed in social research frequently raise privacy and confidentiality problems of their own that are to

some extent independent of the activity or behaviour under examination [6].

Thus the role of confidentiality in social research may be particularly significant, perhaps even more so than in the context of medical practice. The difficulty in making a precise parallel with the clinical encounter comes particularly through differences in the expectations of the participants, and the potency, saliency and boundedness of medicine as opposed to social science. In most cases social scientists are not in ‘clinical’ situations, they are in ‘research’ situations. In these research situations the initiator of the encounter is generally the social scientist rather than the informant. It is not clear that the offer of confidentiality which frequently accompanies these encounters is as crucial a guarantee of their efficacy, as it is in clinical encounters. Nonetheless the maintenance of confidentiality during and after the social research transaction, in accordance with prior agree- ments with informants, is an axiomatic feature of ethical codes [7].

For both social researchers and medical practitioners confidentiality as a protection for patients and informants may be considered as inherently fragile, particularly from external intrusions on the privacy of their mutual encounters. Clinical confidentiality is currently perceived to be under considerable threat. Moves to centralise, and coordinate access to medical records [3, p. 1351; the increasingly intrusive effects of litigation [9] present major challenges to the practical meaning of the concept. The challenge is perceived as protecting the patient, for without confidentiality there would be no effective medicine-for patients would be unwilling to reveal information essential to the proper diagnosis and treatment of their condition.

The threat to the confidentiality of the encounters of social scientists and their informants has been perceived as less general until recently, although Plummer documents some particularly problematic cases before and just after the Second World War [IO]. Whilst in certain areas of social scientific research there has always been a threat to such encounters-particularly in relation to deviant and/or illegal activities [l ll_these threats have been perceived by

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most social scientists as relatively marginal to the enterprise of social research as a whole. More recently the situation has been considered more fundamentally problematic. The prolonged discussions over data protection following the report of the Lindop Committee in the United Kingdom [12], and the passing of the Data Protection Act 1984, have reopened questions about the nature of confidentiality. The storage of, and access to, data obtained in confidence in social research encounters has thus become a more formal issue, with increasingly visible legal as well as ethical implications. There is concern, as in the field of medicine, that certain kinds of social research could become difficult, if not impossible, to undertake because the revelations of informants could not be protected.

UNDERSTANDING THE CONTEXT OF CONFIDENTIALITY

In these views above, the key component of confidentiality is considered to be the need to protect the informant or the patient and, through that protection, offer the possibility of the effective practice of medicine, or social science. A threat to the confidentiality of encounters is seen as fundamentally destruc- tive to the informant or patient, and to the practice of medicine or social science. Jefferys [13] has noted that this view has been based on a number of arguable assumptions-specially assumptions about the nature of the encounters of doctors and social scientists with patients and informants.

Encounters between these parties take place in the context of a series of social, moral, professional and legal frameworks which propel one party towards the other for particular purposes. Without those frameworks the encounters would not initially occur, and they more, or less successfully regulate the outcomes of the encounters. The protection of the individual confidences of those giving information is but one aspect of these interactions.

The organisation of medical practice as a professional activity having a market monopoly over a defined area of knowledge, and a particular client group, is clearly dependent both on the power, and the authority that can be exercised to establish this end. Ethical codes with confidentiality at the core, have been used as a means of transforming power in to externally recognised authority [14]. However the regulatory power which such codes continue to embody for the internal organisation of the profession is just as significant [15]. The management of the patients’ secrets and the circumstances in which they may or may not be divulged constructs a particular and (from a medical point of view) unique relationship between a medical practitioner and their patient.

For social scientists the position is rather different. Apart from professional organisations of psycholo- gists in the United States and Britain and elsewhere which have ethical regulatory systems parallel to those of medicine in all but the extent of their external legitimacy [ 161, other disciplines have looser codes which reflect their lack of complete control of a knowledge base (including a diversity of research methods); a lack of control over entry to the pro-

fession, or the presence of well defined client groups. Nonetheless such codes, emphasising their adherence to norms of confidentiality amongst other ethical values, have been considered a necessary addition in the discipline’s own quest for professional legitimacy, as much as in their overweening concerns for their informants’ ethical rights [ 171. Paradoxically in spite of these generally more loosely regulated systems of the ethical dimensions of social research it can realistically be argued that confidentiality in particular is more important to social research, than biomedical research. As Cassell notes, harms in social research generally come from knowledge damaging the ‘social person’ rather than (as in biomedical research) coming from physical harm damaging the ‘biological person’ [18]. Regulating the direction and flow of knowledge can thus be seen to be at the core of ethical concern in social research, and therefore at the core of professional legitimacy.

Although the idea of confidentiality is thus significant in a variety of ways to the organisation of professional activities, as well as to the encounter with respective client groups, its precise definition, let alone its regulation, has always been a matter for debate.

THE MEANING OF CONFIDENTIALITY

Confidentiality is, at one level, an apparently clear concept. The definition of Gillon has been noted above. For Biegler it is a term which: “. . . applies to the non-disclosure of information in many professional relationships” [ 191.

The idea of ‘protecting secrets’ or the ‘non- disclosure of information’ implies, as one writer has noted, absolute discretion [20]. However the drawing up of codes of practice for the operationalisation of the concept of confidentiality leads in a quite different direction. In a medical context, where the absolute idea of confidentiality finds most favour, very few codes have followed this theme. One of the few recent codes of this type is that adopted by the World Medical Association in 1948 which states in part that: “A doctor owes to his patient absolute secrecy on all which has been confided to him or which he knows because of the confidence entrusted to him.”

The codes of both the AMA and the BMA indicate a far more qualified view of confidentiality. Section 9 of the Principles of Ethics of the AMA reads:

A physician may not reveal the confidences entrusted to him in the course of medical attendance, or the deficiencies he may observe in the character of patients, unless he is required to do so by law or unless it becomes necessary in order to protect the welfare of the individual or the community.

The American Psychiatric Association has added a further 10 qualifications to this section of the code of ethics in order to deal with the particularly difficult problem of confidentiality in psychiatry [21]. Biegler notes rather plaintively that there is: “an informal understanding and respect in British courts for medical confidentiality” [19, p. 2201, compared to the statute ridden state of American law in relation to confidentiality. However in discussing British legal

Confidentiality for whom? 281

practice in this respect, and in particular considering the operation of the BMA code of ethics, McLean and Maher note that: “. . . the statement of the principle [of confidentiality] and the exceptions to it are so broad that the principle is either vacuous or useless as a guide to practical reasoning” [8, p. 1761.

It seems clear that the interpretation of the idea of confidentiality is practically problematic. The more statutes and litigation that are applied to the concept the more elusive it becomes. The elusiveness of confidentiality, and its problematic legal specification, may be because of what Biegler calls its “ . . . subliminal elements . . .” [19, p. 2211. The meaning systems bound up with the notion of confidentiality and its practical operation, are so complex that it is hard to envisage a uniformity of interpretation between doctors and patients.

Difficulties involved in the meaning of confidentiality, are compounded by the ways in which the concept is used in practice. One particular idea through which existing practice is legitimated is that of ‘extended confidentiality’. Extended confidentiality has been used to describe the practice whereby the verbal or written information stemming from medical encounters is passed to others who have a professional interest in the encounters concerned. Thus ‘normal practice’ appears to be that medical, paramedical, clerical and secretarial staff have access to material technically confidential to a single medical practitioner. Wing notes: “It is well accepted in practice, by both parties, that specific permission cannot be sought every time confidential material is transferred” [22].

This ‘sharing’ of confidential information however, can reach a stage where the ‘confidential’ component of the information seems to have been diluted to the point where it ceases to exist. For example Siegler found in his study that one patient’s records could legitimately be accessed by up to 100 staff at his hospital [23]. Given the range and specialisation of staff in a medical environment, and given the diagnosis or treatment process along which patients may travel, this may not be unusual. It is not at all clear that patients have ‘well accepted in practice’ this idea. The latitude given in this respect to the non-disclosure of personal information or the keeping of people’s secrets, seems to be considerably at variance with more formal statements about the significance of the confidential relationship involved in the unique interaction of single doctor in a particular setting with a particular patient.

The meaning of confidentiality for social researchers is at least as problematic as for those engaged in medical practice although because of the generally less systematic codification and regulation of ethical conduct in social research, the correspond- ing dilemmas and problems about meaning may-at least for the most part-remain less formally and professionally visible. However, precisely because of this point a major additional range of issues is raised about confidentiality in the undertaking of social research. The imprecision of the idea, and some potential problems in establishing what confidentiality is, can be seen in a reference to confidentiality in SSM 32,3--D

the British Sociological Association Code of Practice where it is stated that:

They [sociologists] should make clear the nature of any confidentiality offered to subjects and should strive to maintain what they offer [7].

Elsewhere in the Code it is indicated that:

They [sociologists] should not give a guarantee of confidentiality of a kind they may not be able to fulfil.

These two quotations raise a number of issues. First of all the nature of meaning of confidentiality is not defined in any a priori sense. Second it is treated as what Lowman and Soule called a ‘situated’ ethical idea [24] in which its characteristics are apparently decided by the investigator in the research situation, in which the option may be to offer anything between no or ‘complete’ confidentiality. Third, although the injunction to sociologists to maintain confidentiality in the second quotation is more absolute than the first, the tenor of the statements is relatively permiss- ive compared to statements in the ethical codes for medical practice noted above. By and large these three observations suggest that, contrary to the highly structured approach to the issue in medical practice, confidentiality is considered to be a matter which should be negotiated in private transactions between consenting adults-one being the researcher and the other being the subject. This approach is coincident with Plummer’s description of the essence of what he calls a relativist view of moral transactions, which is that social research ethics are more or less identical to everyday ethics [lo, p. 1411.

The ‘situated’ view of confidentiality arises out of characteristics of particular kinds of social research which make the formal application of certain aspects of ethical codes difficult. Unlike most biomedical encounters which generally occur in formal, structured and predictable settings social research may take place in informal, unstructured and unpredictable settings. In ethnographic research for example, individual informants may be actively sought and identified prior to contact or they may ‘materialise’ in the course of research in informal settings. It may not be initially clear what information is relevant to the goals of the research which may change in their emphasis during a study, as may the researchers’ personal as well as professional relationships with informants. In these kinds of settings negotiations with informants about the nature of the confidentiality they will be given by investigators can be both varied and problematic [25].

The context within which social research is under- taken is particularly important to interpreting the meaning of confidentiality, especially that stemming from the distinction between what is perceived to be private and public information. Although there is substantial debate about both the definition of privacy, and whether it is an idea derivative from other ethical principles such as personal autonomy [26], Caplan has argued that the key to the debate is not so much the situation of knowing personal (private) information but of revealing it to others [l]. The question of the confidentiality of such information has also become linked with vigorous argument over the status of covert social research [27]. Even if such research could in certain circumitances be morally

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justified, the question of what additional ethical onus is placed on the investigator over the disclosure of data obtained in this way is a critically important one. For some social investigators the major objective in undertaking covert research is precisely to enable the revelation of information which opens up hidden issues about inequality, power and control [35]. In this view, claims that all subjects have an identical moral claim to the confidentiality of private information are compromised by reference to their respective social roles-those that are more vulnerable, more powerless, and less equal having a greater claim to confidentiality [29].

The relationship between ‘situated’, investigator specific and potentially unequal means of access to confidentiality in a significant proportion of social research, and the highly regulated ‘legalism’ [24] of codes in biomedicine which espouse the applicability of the same broad principles in all cases produces major issues of compatibility in terms of the meaning as well as the application of the idea. In social research in medical practice in general, and in ethnographic studies in particular which operate in a biomedical context-in studies of informal aspects of hospital or clinic organisation, or relationships in medical settings-the difficulty of reconciling these two views of the nature of confidentiality is clear [30,31]. Both of the approaches however appear to be based at some point on the argument that the protection of the subject is of paramount importance, despite subsequent substantial modifications of this idea in practice.

MAKING CHOICES CONFIDENTIALITY AND THE PROTECTION OF PATIENTS AND INFORMANTS

The ostensibly common set of normative expectations which both parties bring to a medical or social research encounter may be argued to provide a firm basis on which confidentiality can be endorsed and protected in patients’ or informants’ interests. In clinical medicine it may be suggested that the ‘help-seeking behaviour’ initiated by a patient in contacting a doctor implies a recognition of the doctor’s realm of expertise, and hence a recognition of the objectives which the doctor brings to the encounter.

The difficulty with this approach lies first in the complex pathways that patients take to a doctor and the differing expectations which they have of the encounter [32], and second on the contingent nature of the acceptance of clinical objectives. In broad terms the patient may well be seeking the doctor’s help ‘to get better’, although ‘getting better’, and the mechanisms through which this is achieved may be the object of contention.

McLean and Maher argue that such a problem centres on two quite different models of doctor- patient relationships in which the idea of confidentiality can be considered in different ways. They suggest that the medical encounter can be taken:

. ..as either a purely technical and advisory matter in which the doctor is the agent of the patient whose consent is crucial to the whole relationship, or alternatively the relationship is seen as one involving definite and fixed aims (mainly those relating to the cure or restoration of health of the patient)

and the central aspect is the mode in which the doctor acts to achieve these aims [8, p. 1781.

In the first case there is a basis in ‘autonomy based ethics’ where the key to action is the moral nature of personal autonomy, and in the second case there is a basis in ‘utilitarianism’ where the key to action is the dominant role of the doctor’s expertise. There is some evidence that the former view of the medical encounter is becoming more significant for those in the role of patients [33], and therefore that there is likely to be increasing uncertainty, if not actual disagreement, on the precise purpose of a medical encounter. This may lead to the reinforcement of quite different views of confidentiality.

For Childress the issues revolve around the nature of paternalism, in which it is not at all clear that there is an automatic, or even a significant congru- ence between medical authority and patient autonomy. As Childress notes in his discussion of confidentiality: “Rarely are we philanthropists pure and simple” [34].

He then goes on to argue for the reciprocity of the doctor-patient relationship. In particular the doctor should not be perceived as independent and self-sufficient, when in fact there is considerable indebtedness to patients, colleagues, teachers and indeed to society at large. In this context the significant role of confidentiality is likely to be as much in the doctor’s interest as it is in the patient’s interest. This is not to say that doctors’ (or for that matter social scientists’) interests do not have a legitimacy or validity, but that they should be recognised within the context of an encounter with a patient or an informant. Confidentiality is ultimately about the restric- tion of the flow of information. The management of information presents a powerful gatekeeping role more generally available to the doctor rather than to the patient.

The problem of agreement on objectives as a basis for confidentiality is even more complex in the case of research, rather than clinical encounters. Friedson’s line of argument is that the world of the clinician and the scientist are fundamentally different [35]. The scientist emphasises coherent theory, skepticism, detachment from the individual case and precise and reliable diagnosis, whilst the clinician emphasises the practical action, empathy, involve- ment and the pragmatic use of diagnoses. In the case of the scientist, either medical or social, it is likely that the purposes or objectives of any encounter with an informant or patient will be even more subject to differential interpretation than in a clinical setting. Confidentiality itself is thus also to be variably interpreted.

Largely because of the lack of a clearly articulated and publicly legitimated role the objectives of the interactions between social researchers and their informants may be based on even less common understanding than those involving biomedical researchers. However, even if the precise purpose of the interactions may not always be clear (to informants and even occasionally to investigators), it is evident that their content may be more readily shared-the common currency of much social research being everyday attitudes, beliefs and behaviour. Perhaps because


of that common currency even cursory indications of confidentiality on the social investigator’s part may elicit information of a revelatory kind for the social researcher as friend. Such a situation is POSS-

ible because of an apparent paradox-the social researcher’s proximity to everyday concerns as a temporary friend, and their distance from those concerns as a passing stranger.

This kind of ambivalent role presents both major opportunities for data gathering in medical settings, and major difficulties particularly in relation to the maintenance of confidentiality. Confidential information as part of that setting may be readily available to social researchers by joining the circle of extended confidentiality either as ‘honorary clinicians’, or as friendly strangers within the general orbit of the medical enterprise. Ethical problems may arise in the extent to which social researchers feel they can be full partners in the sharing of secrets or confidences depending on the roles they have taken. Reinharz notes the ethical issues she faced in her various covert roles in relation to patients in a mental hospital, and how and when to reveal confidences thus obtained particularly to medical staff [36]. In a hierarchical social structure there are difficulties in meeting the expectations of senior staff who may anticipate, even demand, by virtue of their position, information obtained by social researchers about others formally under their control [37]. Atkinson implicitly indicates similar ethical problems in managing the complex pattern of highly fonnalised relationships in the medical setting that he studied [30].

There may be further difficult ethical problems raised in the discovery of information in privileged settings inside, or outside, hospitals. Some of these problems may involve illegal or negligent acts, as has been noted in the study of child abuse [38], or where medical malpractice may have occurred [39]. For some researchers the response to such situations is to seek to maintain a non-interventionist (and non- revelatory) stance for research reasons-thus not altering in a dramatic way the phenomena that are being studied [40]. This position appears to run contrary to the way that the practice of confidentiality operates amongst clinicians and medical researchers noted above, where such situations would appear to fall within the exceptions to the general principle of not disclosing information. There may also be objections to non-intervention on the grounds of either contravening what might be seen as the ethics which govern everyday interactions [lo], or more particularly in not upholding what the Belmont Report described as the principle of respect for persons [41]. It is also possible that there may be legal obligations on the social researcher to compromise confidentiality in certain situations [42]. The ground rules as to how social researchers should operate when faced with such dilemmas is often made more difficult because of the ‘situated’ ethical traditions in the social sciences where regulatory codes, and pre- cedents as a guide for future actions, are not readily available.

Such ethical problems raise more general issues of the balance between the collective benefits which may result from the breaking of confidences, against the

individual or (in certain cases) the collective harms that may result from that action.

There has been much debate about the use of data in epidemiological research which has been gathered legitimately (with informed consent) for one purpose and then employed for another. Such a situation may either occur directly as a consequence of the increasing statistical possibilities for linking previously separated data sets; with the possibility of using computer&d clinical records for research purposes, or when new collective imperatives are seen to arise in relation to existing data. The implications of such issues which have been largely debated in relation to medical research have begun to gain considerable currency, and generate substantial concern amongst social researchers.

Wallace argues that epidemiologic considerations may be so pressing that specific consents given with the implied confidentiality related to those consents can be overriden in certain circumstances where there are sufficient safeguards against individual identification [43], although as he indicates even with pro- cedural constraints the integrity of the epidemiologist is still the major practical safeguard. The issue is made more problematic in that it may be difficult, if not realistically impossible, to return to the subjects concerned to renew consent for a wider research brief, and thus decision-making will be defucto delegated to the researchers concerned with what may be less than effective regulatory safeguards. Such issues are insinuating themselves into much social research and raise special difficulties where there are choices not only between the collective good and the protection of an individual, but where there may be disputed views as to the status of that collective good [44]. In the case of social and epidemiological research on AIDS and HIV infection these issues are raised in a major way [45].

In this discussion it has become clear that in practice there is no absolute confidentiality that can be offered to the individual either as patient or as informant. In the codes of ethics drawn up by the British and American Medical Associations such protection is severely restricted. Indeed it might be argued that in practice there is little or no protection offered at all. The variety of circumstances in which confidential material is, or can be, released, is such as to preclude any certain protection. As has already been noted, there has been a trend, more evident in the United States until recently, to attempt to specify more precisely and legally the circumstances in which confidential material can be released. Adversarial legal processes both lead to this greater specification and to what Biegler calls the “conflict of countervail- ing rights” [19] between the confidentiality of the clinical encounter, and the wider interests of the community at large.

For some, the conflict noted above can be more or less reconciled by using the utilitarian view of encounters, in which the judgement of the senior professional party to the encounter predominates as to what is in the patient’s best interests. In this context the protection of the patient is, both defacto and de jut-e, an axiomatic and integral part of professional duty. Thus professional judgement, and the protection of the patient’s best interests are one and the same thing.

284 IAN ROBINWN

However this particular view is difficult to sustain in its pure form given major historical changes in the ethical and social context of medical transactions.

The social researcher operating in a medical setting has a particular set of problems in sustaining con& dentiality in their encounters with informants. The normal procedures and understandings through which information is exchanged within professional relationships in that setting means that it may be difficult to sustain confidentiality for individual informants, or classes of informants-such as patients. Social researchers may therefore find it difficult not to become party to the practice of extended confidentiality against what they may consider to be the interests of their informants. In this respect their frequently marginal role in such settings both may allow unique access to information from more vulnerable informants, but implicitly place obligations on them to others professionally engaged in the same setting. Ethical guidelines generally available for social researchers are such as allow and encourage investigators themselves to act in what has been described in a ‘situated’ way in responding to pressures to disclose information. For informants such a position may present major difficulties as to the precise basis on which confidentiality might be offered by a social researcher and subsequently maintained.

Finally, an additional issue arises for the social researcher-and their informants-in the circumstances in which information is published, or made more generally available. The publishing of such case studies has been part of the practice of biomedical research. Although the pathway to consent for the publishing of such material is not always clear, it is often assumed that the presentation of such material relates to the ‘biological’ rather than the ‘social’ body of those concerned, thus it is less problematic. It is deemed to be circulated in effect as part of an enhanced extended confidentiality amongst professional colleagues. If this argument is taken, material published by social researchers presents more ethical problems both because of its relationship to the ‘social’ body and its potentially wide audience because of its subject matter. In so far as social researchers are concerned with authentic representations, as Plummer indicates they should be, then modifications of details which may lead to the identification of individuals, groups or settings should be as minimal as possible [lo]. It is of course a matter of judgement what leads to such identification, and there is little formal guidance available to follow on such matters. Even where permissions have been formally obtained for publication, and thus for the implicit fracturing of some elements of confidentiality, the impact of publication may be such as to present unforeseen problems. Colvard illustrates how the protection of individuals may raise problems in studies even where they have given permission, and are not directly identified-but where their prominent role in particular settings cannot but lead to their identification [lo]. Thus the general issue of publication may give rise to particularly difficult, and in some respects unpredictable, difficulties for social researchers in managing the question of confidentiality to informants as individuals or collectivities.

CONFIDENTIALITY IN SOCIAL SCIENCE AND MEDICAL PRACIICE

The discussion above indicates that the idea of confidentiality in both social science and medical practice is extremely problematic. In a simple reading of the arguments it might be said that the idea of confidentiality is a powerful and influential fiction, which has little agreed or formal substance at its core. The protection of the patient, or the informant, and through that the protection of the enterprise of medicine or social science seems too grandiose an idea, for so partial and fractured a concept. In the end it seems more appropriate to consider the issue of confidentiality in the domains of medicine and social science in a quite different way. In this consideration ethical issues such as confidentiality are grounded on one hand in questions of power and authority, and on the other hand in the interplay between what. in a medical context, Clayton has -called the individual ethic and the collective ethic 1461.

As far as medical authoriiy -is concerned these questions are succinctly summarised by McLean and Maher as hinging, in a clinical setting, on whether confidentiality should be considered in the light of: “the doctor’s duty or the patient’s rights” [8, p. 981.

Is the relationship between patient and doctor perceived to be one based on a contract between two more or less equal parties, in which the patient’s consent to the contract is contingent and negotiated? Or is it perceived to be one in which doctors, embedded by virtue of their skill and expertise in a firm and honourable tradition, exercise their judgement and authority in the patient% best interests, whatever the patient might consider them to be?

Increasingly it is becoming harder to sustain the latter position. The rise of the commitment by many individuals and groups to their ‘Participation in Health’ [33] implies a changing view of the ethical and political basis of medical practice. However there is little substantive evidence as yet that the management of confidentiality in the encounter between doctor and patient has changed substantially as a result of this particular process. Indeed there is interesting evidence about the extent to which there may be felt obligations on the part of patients to protect the confidentiality of encounters with doctors in the interests of the latter [47].

As far as social researchers are concerned they have tended to consider their power and authority in a far more ambivalent way. Interested as they are in the social components of beliefs and behaviour, moral principles which emphasise the autonomy and dis- crete nature of the individual may be circumscribed by wider concerns with collective ethical values. In this respect the professional role may be considered as one which is not neutral, detached and centred on the individual but is active, partial and committed to particular social values. There may not only be advocacy of the claims of individuals or groups, but in certain cases a perception of a common cause between the social researcher and the informant(s) [28,29]. Such a position is one in which equal claims for confidentiality amongst all informants may not be treated equally in the perceived interests of, for example social justice. The consequences of this view


are problematic, There is both a moral, and practical difficulty in a professional relationship in acting not only in the best interests of an informant, but in considering that the two interests-of the researcher and the informant-may be the same. For this reason some ethical guidelines in the social sciences explicitly refer to this problem [7], although there is often little explicit guidance as to the ethical complexities of researching in a situation where major discrepancies in power, wealth and status occur. The ‘situated’ view of the way that ethical dilemmas, including those over confidentiality, are resolved in much social research may thus pose particular difficulties for social researchers in medical settings.

For some social researchers therefore, and particularly for some sociologists, there may be. a temptation that their elevation of concern for issues of collective ethical importance-such as inequality, disadvantage or hidden and discriminatory social agendas-will be associated with a less than universal application of the practice of individual confidentiality. This approach would not accord well with procedures in biomedicine, no matter how much their application might be flawed, or with certain general moral principles which have guided much research in biomedical disciplines. Such a position thus makes social research in a medical situation particularly problematic as well as, even more importantly, leading to major difficulties in negotiations with informants over the meaning and application of confidentiality in research encounters.

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confidentiality for whom?

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