Who Owns My Identity?

Cancer registries routinely collect a constellation of identifiers derived from individuals that, when combined, result in personal individuation. Significantly, this collection is considered justified even without formal consent because it is undertaken for the purposes of public health surveillance and clinical and social research. This, in turn, is thought to constitute a transfer of ownership of the identifiers to registries as an agency of the state. But since such a transfer is, on its face, both unnecessary and unethical, we have to ask: what might justify it?

The question is unavoidable if we wish to determine who does own the identifiers. Consider the nature of the information involved: name, sex, gender, genetics, birth date, nationality, location, occupation, etc. Combined, this is the very stuff of personal individuation, without which name alone does not convey a person's identity fully. As such, the information is reduced to data only in the subsequent process of aggregation required for the identification of populations. Data are to the identity of populations what individuating information is to the identity of persons. The concept of personal identity constituted in such information is not to be confused with the concept of population identity as constituted in data. Doing so is, in logic, a category mistake and, in this case, leads to the mistaken inference that, in owning population data, registries or research institutions consequently own individuating information.

Avoiding this mistake requires understanding the social nature and purpose of the cancer registry agenda, a transaction involving mutual interests between individual members and their society. If so, why would a transfer of ownership and members' loss of control over their interests be acceptable when a custodial deposit, much like a bank deposit, would be no less effective and would not result in a loss of control? It isn't, unless we consider society to consist merely in what American philosopher, John Dewey,¹ decried as “a numerical aggregate of individual units,” urging us instead to view it as an organism constituted in members who are social beings. “A State represents men [sic] so far as they have become organically related to one another,” in recognition of certain common interests that require this relationship, if they are to be realized. From the premise that the individual and society are organically related, Dewey concluded that, to the extent society embodies a common good, to that extent each individual member does not merely participate in it proportionately to individual interest but is its very embodiment. Analogically speaking, according to Dewey, just as the “eye is the body organized for seeing,” so the individual is society organized for pursuing the common good.

There can be little doubt that Dewey regards the interdependence of society and its members as a moral enterprise in which, according to Alan Gewirth,² the identity of the individual consists in their role in a society whose public policies and institutions are designed to combine common goods with individual good as their primary moral purpose. One, that is, in which the individual member is responsible for the well-being of society, and society is responsible for the well-being of the individual member. It is this mutual responsibility that assumes the two ought to be reconciled, and, consequently, as a moral imperative requires appropriate behavior from both for its realization.

If then we consider individual health a good, can we consider it also a common good? Both questions are etiological. As Geoffrey Rose³ observed, etiology addresses two distinct but complementary questions. The first, addressed by medical care, has to do with the particular cause of disease in an individual patient's case, which requires determining the level of risk for disease based on susceptibility. The second, the focus of public health, has to do with the cause of the incidence rate for a disease in a given population, such as “diet and its association with the mean distribution of heart disease across the population.” Knowing disease cause may eventually lead to knowing disease prevention, which is ideally the goal of both medical care and public health. But since determining individual susceptibility is likely inadequate for identifying the root causes of incidence, that must, as Rose concludes, remain the overriding goal, since once known, “susceptibility ceases to matter.”

This, precisely, is what justifies cancer registries routinely collecting individuating medical information. The systematic posing of the first question by health care professionals of individual patients enables public health professionals to ask the second question of a population, now identifiable from the aggregated data resulting from the first question. It also justifies inferring that if we consider individual health a good, we must also consider it a common good. If, for the individual, as organically related to society, that means being organized for pursuing the common good, then, when pursuing their personal health interests, they do so with due regard for the health interests of others. And if the public's health is a necessary condition for the individual's health, then, since collecting individuating information by cancer registries is integral to securing conditions conducive to a population's health, the individual must expect to collaborate with the cancer registries to ensure their success. And if the moral nature of this human societal organism is recognized as a transaction involving mutual interests, then the idea that individuals lose ownership of their individuating information, participation in the transaction would amount to acting against self-interest and consequently be unethical.

If the individual should be considered as society organized for pursuing the common good, here a population's health, then cancer registries are acting in the name of the individual so that they can do for them what they cannot do in their self-interest. And, since individuals should not be expected to act against their best interests, so should they consent to the collection of individuating medical information. Ideally, this is best secured by means of explicit consent from the individual. However, practically speaking, since requiring explicit consent could prevent cancer registries from acting in the individual's best interests, they can function on the basis of an assumed tacit consent. As long as an individual remains freely a member of society, enjoying the benefits of membership, that signals a willingness to be considered as reciprocally organized for pursuing the common good, which should include individual good or at least prevent individual harm.

If the moral argument for the individual's continuing ownership of individuating information in the wake of its collection by cancer registries is compelling, the legal argument to the contrary in favor of state ownership is not, as is acknowledged by the US Health Insurance Portability and Accountability Act (HIPAA).⁴ Left standing, it violates the integrity of persons and the indispensable organic nature of their relationship to society as its members. It results, regrettably, in what Dewey thought of as a society of two classes, those that govern and those that are governed, rather than ideally “two aspects of the same fact—the fact of the possession by society of a unified and articulate will.” It would be hard to think of anything more desirable morally for the success of the working relations between health care and public health. It would be hard to think of anything more unacceptable morally than laws undermining this collaboration and, as a consequence, the very possibility of its success.