Centering human rights and autonomy for all

On centering a concern for the dignity, autonomy, and values of the populations we serve.

One of the most important intellectual strands in public health over the last century has been the development of a health and human rights approach. This approach reflects the understanding that health is inseparable from the social and political rights that support the dignity and autonomy of the individual, and that efforts to improve health must engage with these factors. This echoes the concern for human rights as a global aspiration that emerged in the aftermath of World War II and that is expressed in documents like the Universal Declaration of Human Rights. As our concern for human rights has evolved, so has our understanding of what human rights means in a context of health, our focus broadening beyond healthcare to include the core drivers of health. Such a focus aligns with the spirit of the Declaration, which says:

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”

To my mind, a focus on human rights should be central to everything we do in public health. But sometimes I worry that when we talk of “human rights,” these conversations become vague and, as a result, less consequential than they could be. Our focus on human rights as primarily a global issue has been, in some ways, double-edged. It has inculcated a global concern for the rights of all people, regardless of borders, and has supported the upholding of these rights as a central, if imperfectly realized, aspiration for global development and politics. But this focus has arguably made it possible to see human rights as mainly relevant to issues of war, genocide, and other large-scale global crises, rather than as an imminent, highly local concern which should inform all we do, regardless of the scale of our efforts. This is not to say, of course, that global challenges should not inform our concern for human rights. But we should take care that this focus does not cause us to keep the concept of human rights at arm’s length, as something that only matters “over there.”

Towards this aim, I will here suggest how we can recenter our engagement with human rights, to apply a better, more pragmatic human rights focus to our work. I will do so by addressing what has always seemed to me to be at the heart of a human rights approach—individual autonomy. Merriam-Webster defines “autonomy” as “the quality or state of being self-governing.” For the philosopher Immanuel Kant, autonomy meant our unique human capacity to make choices in accordance with our understanding of morality. In his writing about health and human rights, my colleague George Annas has addressed what a concern for autonomy in health means in practice—a focus on the right of patients to informed consent, including their right to refuse treatment. These perspectives all reflect the central role that individual autonomy should play in our understanding of health and human rights.

Now, in many ways, this poses a conundrum for our pursuit of healthy populations because much of what we talk about in public health is, in fact, about restricting individual autonomy. The classic example of this is speed limits. We impose limits on how fast we as individuals can get to where we want to go because we recognize that doing so keeps us safer, reducing the risk of injury and death. We are protecting people by limiting their autonomy. I have in the past engaged with public health’s embrace of such limits by addressing the difference between “freedom to” and “freedom from.” “Freedom to” is the freedom of the individual to do as she pleases, to live a rich, full life unencumbered by undue restrictions. “Freedom from” is the freedom to live without the threat of disease and preventable harm. “Freedom from” can, at times, depend on restrictions on individual autonomy. Yet the aim of these restrictions is to prevent an even greater restriction, the restriction caused by injury, disease, or death. This kind of restriction poses a far greater threat to our capacity to live our lives as we wish than rules and regulations. In public health, we aspire to pursue policies which maximize “freedom from” while respecting “freedom to,” with the goal of promoting the greatest freedom of all—the freedom that comes with health. While health can indeed sometimes come at the expense of “freedom to,” we have a responsibility to ensure we do not impose too much on this freedom, that we are judicious, always, in our approach. As we make this effort, it is important to continue to make the case for “freedom from,” to shift the Overton window towards new understandings of freedom which benefit the health of all. This reflects the importance of clear, empirically based communication when we are asking the public to accept limits on “freedom to” for the sake of health, and of providing well-defined goalposts for how long such measures might be necessary.

Unfortunately, we have not always lived up to the responsibility of balancing respect for individual autonomy with the necessity of sometimes having to limit it. During COVID, whether we meant to or not, many perceived us as acting without regard for “freedom to,” advocating for heavy-handed measures and failing to engage with good faith criticism of our actions. It is worth noting, of course, that much of the criticism we faced was not offered in good faith. It is also important to acknowledge that, in some cases, what was criticized as public health’s overreach was indeed justified by the circumstances of the moment. Nevertheless, at times we let the impression emerge that we do not hold individual autonomy in particularly high regard. This impression served as the organizing principle for a range of criticisms public health faced, some of which could, admittedly, be quite unfocused and ill-conceived. Even if critics of public health did not always have the facts on their side, they could still accuse us of running roughshod over individual autonomy, and this charge would stick because there was some truth to it. Because we often met these criticisms with defensiveness and hostility, rather than with a willingness to be self-reflective and self-correcting, we gave credibility to our critics and undermined our capacity to be effective.

How can we fix this? First, we need to recognize that individual autonomy is at the core of much of the contemporary debate over public health. Our failings during COVID stemmed, in large part, from our hesitance to engage in this debate, to make the affirmative case for an approach to health that respects individual autonomy while also, yes, asking the public to make certain sacrifices to ensure as many people as possible can access the freedom health brings. We have, as a field, long let the foes of any public health restrictions set the terms of this debate, causing us to act defensively, to downplay what we ask of the public and pretend that the measures we call for are all but cost-free with respect to individual autonomy. In this post-war moment for health, we have an opportunity to reengage with these fundamental questions, to say, “Yes, there are times when we must curtail individual autonomy, but we do so to support a vision of the common good aimed at maximizing freedom for all by supporting health for all.” Core to this case for health is the argument that we do want people to have freedom, and for this reason we take steps that will durably safeguard this freedom, steps which are even more necessary in times of crisis like pandemics. For this argument to be most powerful, it should be grounded in a vision of human rights, reflecting the fundamental “why?” of our efforts.

Second, we need to be judicious about when we are in favor of restricting autonomy. It will likely always be the case that we must sometimes call for policies which restrict “freedom to” to maximize “freedom from.” Yet just because this is sometimes necessary does not mean it is always necessary and we have a responsibility to keep this distinction in mind. In public health, we can find ourselves in positions of influence, supported by our science and the accumulated expertise of our field. This means that when we speak, we are often listened to, and our recommendations can quickly become policies which shape the lives of millions. Because we have this power, we should take care to use it only when it is necessary, and never more than the moment calls for. In some areas, public health has shown a willingness to strike this balance, to debate when we should take a more active role in the lives of the populations we serve and when such engagement may not be worth infringements on autonomy or privacy. This has been, for example, an animating concern of the debate about directly observed therapy (DOT) for treating tuberculosis. On one hand, DOT has the potential to improve the effectiveness of treatment. On the other, it is public health taking a more direct role in structuring the lives of the populations we serve, with all the implications for autonomy this entails. While we have engaged with these tradeoffs in the case of measures like DOT, we have also, at times, wielded our influence with less concern for the autonomy costs of our actions. For public health to work, it must be trusted. This means trusting that we will not ask more than we need to of the public, and that when we do make these asks, we will have first done our due diligence in weighing the tradeoffs involved.

Finally, we need to listen—really listen—to what those who wish to preserve their autonomy are saying. This echoes my last essay, which addressed our engagement with values systems which may be different than our own. We need to understand that, in our zeal to prevent disease and harm, we are acting in accordance with a set of values which are not shared by all. This does not mean we should abandon our values, but it does mean that we have a responsibility to understand alternative perspectives, to better weigh the pros and cons of the actions we consider. We need to engage with a vision of human rights which balances individual autonomy with the pragmatic measures that are sometimes necessary to safeguard health by way of limiting—cautiously, temporarily—this autonomy. By listening to populations when they express concern about these limits, we can better define the scope of our efforts, shaping approaches which support health without unduly constricting what these populations can and cannot do. 

As we revisit the foundations of health in this post-war moment, now is a time to broaden our understanding of human rights. Human rights are not to be kept at a distance, applied only in vague terms to global challenges. The truth is that every move we make in public health is a chance to support human rights—in our community, our country, and our world. This means being judicious in restricting individuals’ autonomy. We can take the pragmatic steps we must sometimes take—calling for limits but only when absolutely necessary—while respecting the dignity of the populations we serve.

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Also this week.

I recently had the pleasure of speaking with Lee Vinsel, Associate Professor of Science, Technology, and Society at Virginia Tech, for our latest Public Health Conversation Starter. Dr. Vinsel reflected on the role of new technologies, including artificial intelligence, on public health.