Confidentiality, Choice, and the Question of Autonomy
Increasingly, subjects in research trials and patients in clinical care are seen in the forefront of news stories, infomercials, and/or advertisements—often using their own names—disclosing information about their condition, treatment, care and its effects. Even in explicit advertisements (for healthcare products, services, etc.) where an obviously false name is used, a subtle—or overt—message may be conveyed to others reflecting potential benefit(s) of disclosing personal identity and information in the public sphere. In this essay, we focus upon this trend, pose questions of whether confidentiality is an absolute requirement of the clinical relationship, address potential effects and implications of patients’ waiving and/or disowning their confidentiality, and frame these issues within an appreciation of the scope and limits of autonomy in medicine.
The Intent of Confidentiality
One of the key issues in the ethical conduct of both research and medical practice is the confidentiality of subjects’ and patients’ identity, and of the findings relevant to their case. In general, researchers and clinicians are obligated to protect the identity of their subjects and ensure that the parameters of such protection are fully explained before any experimental or clinical treatment begins.1,2 By definition, confidentiality refers to information that has been communicated in trust of confidence, such that disclosure would, or could, incur particular prejudice and harm. In research and practice settings, confidentiality involves the management of private information based upon a respect for the person who is the subject/patient.3
The intent of maintaining confidentiality is to afford protection of subjects/patients from the harms of stigma, potential embarrassment, socio-economic manifestations, and illicit use of information.4 But while the autonomy of persons and their freedom to have and maintain privacy and secrecy must be respected, the philosopher Sissela Bok maintains that such respect for autonomy must equally recognize that secrets can be disclosed and shared as personal choice.5 In this way, while the researchers’ and clinicians’ obligation to respect and provide subjects’/patients’ confidentiality is binding, it is also dependent upon each person’s desire and “right” to share information.6
It could be assumed that anonymity and confidentiality would be desired. Yet, certain subjects/patients might refute such ‘protection’ and thus their expressed non-confidentiality (e.g.- disclosure of participant identity and information) would need to be respected, realistically considered, and perhaps complied with. This can be problematic and generates a number of questions. For example, if we assume a priori that subjects/patients deserve anonymity and confidentiality, then are we actually acting paternalistically and impugning participants’ autonomy (i.e.- the negative right of refusal—in this case, their refusal of privacy) if and when we prohibit and/or restrict participants’ opportunity to reveal personal identification? Should subjects and patients be free to disclose their identity as a matter of choice—and clinicians and researchers prohibited from restricting such disclosure—even if it negatively impacts the conduct of clinical care and/or the medical fiduciary?
Choice and Autonomy
So, if we address the notion of autonomy as relevant to persons’ freedom to whatever extent of privacy and secrecy they choose, then what of those situations in which the patients/subjects explicitly desire to waive the provision of confidentiality, and seek to be identified as participant in a particular research study or clinical treatment? To re-iterate, this scenario is becoming increasingly more common, as subjects view such identification as a way of “giving voice” to their personal experience (of a disorder, situation, etc.) or a cause, serving as an example to others, feeling empowered, finding ‘value’ by offering their opinions (and identity), and/or engaging their voice and identity as a marketable commodity.
In this way, individuals may wish to be identified, and may even feel that they have a ‘right’ to be identified if they so wish (viz. Bok’s autonomy7). If this were the case, then by making decisions about confidentiality on behalf of the subjects/patients, researchers and clinicians would be acting paternalistically and further reinforcing the imbalance of power by implying that the imperatives of non-disclosure outweigh the autonomy and ‘rights’ of the subjects.8
So, we might be prompted to question the value of enforcing absolute confidentiality. An underlying logic is that if researchers/clinicians can trust their subjects/patients to make an informed choice to consent to taking part in research and/or treatment, wouldn’t it be logical to assume that these same subjects/patients could also make informed choices about whether or not to waive their confidentiality? In this way, as Bok has noted, latitude to defer confidentiality might be afforded as circumstantially and ethically appropriate. Still, given the multitude of clinical situations and the richness of ethical issues that arise from them, the decision to offer subjects/patients a ‘choice’ as to whether or not to waive confidentiality may not simply be a contingency of informed consent.9
The Risks and Challenges of Identity Disclosure
Given that both research and clinical practice are interactions between moral agents (i.e.- moral enterprises) and therefore dictate ethical conduct, then affording subjects’/patients’ confidentiality can be derived from the maxim of beneficent intent in that it presumably reduces the potential for harm.10 A fundamental issue is the potential risks posed by the loss of confidentiality and the disclosure of personal and clinically relevant information. Certainly, patients would need to be informed of these potential risks. But would this be sufficient in those situations in which subjects’/patients’ decisions to defer confidentiality were made in an emotional state? And if the emotional reaction toward the study or treatment (and its results and outcomes) were to change, such change in emotions and attitudes could have significant impact upon what and how subjects/patients describe their care, and interpret its benefit(s). So, some mechanisms would need to be in place to allow a progressive assessment of patients’ confidentiality decisions. But is this really feasible or possible?
Subjects/patients would need to understand the durability of potential effects once their identity appears in print. Despite the best intentions and most stringent attempts to limit where and how patient information could be revealed and directed, once in the public domain there can never be complete certainty about where the dissemination process could lead and in what context(s) patient information could be accessed, seen, and used. Subjects’ reaction to such use of information may instigate litigious actions and so safeguards would need to be developed to address this issue—to protect both patients and researchers/clinicians.11