Dylan McKibbon argues that the concept of privacy has been long misunderstood and ought to be elevated to the status of a core bioethical principle to be regarded as a cornerstone of bioethical activity.

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When an ethicist speaks about non-maleficence, they do not reference the criminal code; it is understood that the criminal code is qualitatively distinct from the ethical principle of non-maleficence. This makes sense, because laws are different from principles. Similarly, privacy legislation is separate and apart from the idea of privacy itself. Why, then, does bioethics regard privacy only as a set of laws, and not as a principle itself? Further still, why has privacy been understood as something separate from ethics; as something that is ancillary, derivative, and subordinate?  I am a Health Privacy Officer and, from my perspective, I believe this to be woefully insufficient. Bioethical scholarship has committed a critical error by failing to recognize privacy as a principle in its own right. An ethical orphan, it has been maligned and instrumentalized; understood only as that which is to be hidden away but never seen.

Privacy is not about secrecy; it is about intelligibility, and that means privacy is fundamentally about transparency and articulating the flow of information while supporting the checks and balances that create frameworks for the appropriate and responsible sharing of information. For example, demands for information – be it from a patient, or an auditor, for example – are just as likely to invoke the notion of privacy as are the arguments made to withhold it and, conversely, a refusal to provide information is just as likely to invoke the notion of transparency as are the arguments made to obtain it. They each engage with and reflect upon each other in a kind of informational dialectic that is not transactional, but formative and relational.

Photo Credit: Public Health Image Library (PHIL) – CDC. Image Description: A pregnant woman speaking with a healthcare provider.

So, while the norms of privacy are the norms of transparency and the ethical rules about transparency are the ethical rules about privacy, privacy itself is often seen as little more than a compliance requirement or a substantive law. But the principle of privacy goes beyond the laws of privacy, in a manner similar to how justice transcends the limitations of the law.

Ethical principles, such as justice, compel the responsible leadership of public institutions. But it is accountability which drives and sustains the spirit of justice, and so the responsible leadership of any public institution, especially in healthcare, requires accountability. Accountability is facilitated via the mechanisms of transparency, which are themselves enforced and codified in the values and laws of privacy. There is no justice without accountability, and there is no accountability without transparency. But to have transparency, there must be a mechanism to meaningfully enforce it. Insofar as the rules and legislation about privacy also guide and regulate transparency, privacy is a necessary condition for achieving justice, as it underpins the mechanisms that ensure transparency and accountability. Privacy, understood only as “the law”, is a maligned distortion that transforms it into a box to be checked and a tool to be wielded. Privacy is not a box, and it is not a tool. Privacy is, and always has been, an ethical principle that underpins most bioethical principles as a foundational requisite. That is to say, privacy doesn’t just support these principles – it also makes them possible; without it, they become functionally impaired or entirely impossible to realize.

Privacy and transparency are complimentary functions of the same legislative mechanisms, and they should not be understood to the exclusion of the other. By extension, and paradoxically, weakening or eliminating privacy protections actually harm transparency in a number of ways – such as chilling effects on disclosure or reporting systems, fear of reprisal or liability exposure, or encouraging informal “off-the-record” channels of communication to avoid documentation.

Consider the bioethicist: privacy is critical for ethical discernment and deliberation, particularly so in the activity of consultation, and manifests as the tempering of emotional responses, engagement of self-reflection, and the maintenance of interpersonal boundaries. An ethicist must also be an expert in understanding what information to share, with whom, when, how, and why. This skill goes beyond mere confidentiality; it encompasses the nuanced management of information flow that enables and supports the consultation process itself.

For example, in a complex ICU case involving family conflict over the withdrawal of life support, the ethicist might hold private conversations with clinicians and family members—not to conceal information, but to create protected space for emotional clarity, self-reflection, and moral insight. Through discernment about what to disclose, to whom, and when, the ethicist structures the conditions that make meaningful deliberation possible. Privacy in this context is not an act of withholding; it is the calibrated architecture that allows ethical understanding to emerge. Ethicists construct and maintain the internal reflective spaces necessary for ethical reasoning of everyone involved, and they do so while simultaneously protecting the outward integrity of the consultation process by safeguarding the external conditions necessary for trust and intelligibility to emerge.

Seen in this light, bioethical scholarship and activism ought to recognize the primacy that privacy holds as not just as a value, but as a principle that is deserving of elevation to the status of a bioethical principle in its own right, and not merely equal to the other principles of beneficence, non-maleficence, respect for autonomy, and justice, but as their most salient, foundational, and perhaps conditional, prerequisite.

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Dylan McKibbon is a Health Privacy Officer with a background in Philosophy and Research Ethics. He is also a member of the Health Sciences North Research Ethics Board, a Senior Clinical Ethics Intern in the Ethics Quality Improvement Lab at William Osler Health System, and is obtaining his MHSc in Biomedical Ethics from the University of Toronto.