Summer 2022 NAACCR Narrative Leave a comment

T. Patrick Hill Ph.D.
Associate Professor Emeritus
Rutgers University

 

There is little doubt that, practically speaking, the sharing of data from state cancer registries in the interests of cancer surveillance and cancer research is a worthy undertaking. Since 1987, NAACCR has been a driving force in improving the quality and use of cancer data with uniform data standards, including aggregates of their data so critical for cancer surveillance, control and research and the equally critical purpose of minimizing the burden of cancer across the population But, given these purposes, does data sharing at this level rise to the point of becoming an ethical obligation? It would if there is necessary relation between cancer surveillance and research and the common good. That however presumes there is such a thing as the common good and it is identifiable.

COMMON GOOD

Historically, there appears to be a general acceptance of its existence, even though in what the common good consists has been far more uncertain than certain. And that is because of the pluralism that characterizes human society. For example, given cultural, political, ethnic differences, how is it possible that a good that is literally common to all human beings exists, let alone be identifiable? Is it possible that despite such pervasive differences, there is a good that all human beings, as human beings, have in common?

SOCIAL CONTRACT

Yes, there is. And it is based on the fact that, as human beings, we are by nature purposive or intentional in our behavior. But that presumes a freedom without which human beings cannot pursue what must be autonomously determined purposes. Since, however, as human beings, we live in society, the freedom that one human being enjoys depends on how other human beings enjoy their freedom. In other words, living in society presumes the existence of an implicit social contract under which each of us is at once an independent individual and an interdependent subject, enjoying the collective benefits of interdependence but only on condition of individually contributing to the maintenance of those collective benefits.

When individual members of society fulfill their obligations under the contract, society, as distinct from all the individuals who are its members, must reciprocate by securing conditions under which individual freedom is secure so that purposiveness can be pursued. From this it becomes clear that there is a good that is shared by human beings as human beings which consists in freedom and purposiveness, the enjoyment of which requires a societal structure that makes this enjoyment both possible and predictable. In the absence of this structure, the integrity of our human nature is essentially compromised. If human beings are unable to enjoy freedom so as to be purposive, they are unable to behave as they ought to behave in order to behave humanly.

COMMON GOOD AND ETHICS

If then the good common to all human beings consists in freedom and purposiveness, without which our very identity as human beings is denied, both are indispensable. This means that when we invoke the notion of common good we do so to prescribe it, as something that ought to be secured. And since no one individual has the capacity do this, it has to be done by individual members of society acting collectively and reciprocally to ensure it. This is what we mean by acting ethically.

Ethics functions to assess human behavior by answering the question, “What ought (not can) we do?” in situations where our behavior has consequences for others. The distinction is critical because much of what we can do we ought not do. Any one can take the property of another without authorization, but ought not to so as to avoid inflicting the harm of injustice. However, it is only when we can do something that it becomes imperative to ask whether we ought to do it.

When we ask this question, we are in effect assessing an action that is under consideration. That is because logically the word ought implies that we are justifying, or making just, the action under consideration. Now what justifies or makes ethical human beings doing something? That which is concordant with their rational and physical identities working in a manner that is both mutual and reciprocal.

MEANS AND ENDS

If then our question is “ought we to share personal health data?” we are asking what is a question for only ethics to answer by way of justifying or not this particular behavior which, as sharing, unavoidably has consequences for others. To arrive at a satisfactory answer, we must account for its purpose which is to enable cancer surveillance and cancer research. This is because data sharing is related to cancer surveillance and research as a means employed to achieve some end. Given this relationship, ethics requires us further to ask whether surveillance and research justify data sharing, recognizing that in all human behavior, whatever its purpose, the purpose or end does not necessarily justify the means.

Clearly, there is justification for both surveillance and research conducted in a manner that not only avoids harming persons but actually benefits them. But is there anything about data sharing that, as a means to achieve both, would not only compromise the integrity of either, but would also be harmful to the persons whose data are shared? Equally clear is that all three can occasion harm. This underscores the importance of protecting data privacy with the use of well-established electronic means available for this purpose. Assuming that the necessary precautions are taken to prevent the avoidable harm to persons occasioned by sharing data, and conducting surveillance and research, data sharing is clearly justified when undertaken to prevent or mitigate the unavoidable harm caused by cancer, once diagnosed. Consequently, undue emphasis on data privacy at the cost of data sharing is ethically unacceptable.

POSITIVE AND NEGATIVE OBLIGATION

The obligation to pursue the common good of freedom and purposiveness for human beings is at once positive and negative. Given the harm cancer inflicts on both freedom and purposiveness, data sharing meets the two aspects of the obligation, positively in its research role to find cures, negatively in its surveillance role to enhance prevention. In addition, the obligation falls on the individual member of society as the indispensable source of the data and on society as collectively the resource for the data. If then one asks whether society is justified in having data of such a personal nature, even though remaining under the ownership of the person, the answer is yes. Under the terms of the social contract, society is responsible for securing conditions conducive to the public’s health. At the same time, individual members of society, in their legitimate expectation under the contract of benefiting from their membership in society, are responsible for supporting society’s efforts in this regard by contributing their personal data. Should individuals complain that they have no choice, they are correct. They are benefiting from what already has been shared by others and now must sustain those benefits with their own contribution for the common good.

CONCLUSION

The good that is referenced here as common is the good of the United States as the sum of its semi-autonomous states, not the good of each state taken separately. Since cancer as a threat to the common good is no respecter of state boundaries, then each state has to act in such a manner that negatively does no harm to the common good but positively enhances it. For this reason, state legislation that interferes with data sharing between states or for cancer research endeavors is a threat to the common good and therefore unethical. Just as the individual member of society has a responsibility for maintaining the common good, so the individual states constituting the United States have a responsibility to maintain the common good of the Union. Individual members of society who refuse to contribute to the common good, even as they expect to enjoy the benefits of membership in society, are behaving unjustly by exploiting the contributions of those members who do contribute. Individual states, whose policies and regulations have the same outcome, are equally guilty of behaving in the same unjust manner. There is such a thing as the common good, the pursuit and maintenance of which by individual members of society and individual member states of the Union are not discretionary but an overriding, universal ethical obligation.

From the outset, it is hard not to think that the goals adopted by central cancer registries were not an implicit acknowledgement of this obligation. If so, it is hard not to think that when registries consider their present capacity for minimizing if not eliminating altogether the burden of cancer across the population, they can come to an explicit acknowledgement and reassess their approach to data sharing in the interests of the common good.

 

 

Facebooktwitterlinkedinmail

Copyright © 2016 NAACCR, Inc. All Rights Reserved | See NAACCR Partners and Sponsors