Autonomy’s Past and Future

The argument for rights of self-medication parallels the case for informed consent. In a response essay and conversation post, Craig Klugman disputes my claim that people are generally capable of sufficiently understanding their treatment options and competently making choices about their own bodies. If Klugman thinks that people are not capable of making informed and competent medical choices, then he should also reject the principle of informed consent. But to abandon informed consent would not only have bad effects, it would also violate people’s bodily rights and disrespect patients everywhere. For this reason, we should reject medical paternalism and support rights of self-medication.

Consider the experiences of Steve Jobs as an illustration of the importance of informed consent. Jobs was diagnosed with pancreatic cancer in 2003. In a biography of Jobs, Walter Issacson writes,

To the horror of his friends and wife, Jobs decided not to have surgery to remove the tumor, which was the only accepted medical approach. ‘I really didn’t want them to open my body so I tried to see if a few other things would work’ he told [Issacson] years later with a hint of regret. (454).

Nine months after his diagnosis, Jobs had the surgery. I don’t know whether Jobs would have lived longer had he taken the advice of medical professionals and had surgery earlier. But I do know that it would have been wrong for physicians, public officials, or anyone else involved in Jobs’ life to force, threaten, or trick him into having a surgery that he did not want at the time. To do so would have been a wrongful violation of Jobs’ right to make intimate decisions about his own body, even if it could have prevented the progression of his illness.

But when it comes to other treatment decisions, such as the decision to use pharmaceuticals, Klugman argues that patients, including patients like Jobs, are not entitled to make medical choices on the grounds that they are incapable of understanding their options and making competent decisions. My argument is not that patients are always fully informed, ideally rational, or infallible. People can make mistakes about their health. Like Jobs, they may regret their choices. But whatever the standards of knowledge and volitional capacity determine whether patients are able and entitled to give informed consent ought to apply to self-medication as well. People do not lose their ability to understand complex information and make life-changing decisions about their health when their choices involve pharmaceuticals, so they shouldn’t lose their right to make medical choices in these circumstances either.

Moreover, even when ‘doctor knows best’ when it comes to medicine, each person knows what’s best when it comes to her life as a whole. Klugman also raises concerns about patients’ ability to understand or become informed about their medical choices on the grounds that people may be unable to independently access the relevant information about the risks and benefits of treatment. Yet officials and physicians also lack relevant information because they do not know about their patients’ experiences and values. Further, rights of self-medication needn’t prevent patients from consulting with experts. And laws against fraud and mislabeling are also permissible because deception violates patients’ rights and prevents them from making informed medical choices.

Klugman’s other reason for doubting that rights of self-medication are compatible with informed medical decisionmaking is that “pharma manufacturers are unlikely to undertake the same rigorous testing the FDA now requires if it were made optional.” But even though existing regulations provide incentives to test, this argument it would only justify prohibition if prohibition were necessary in order to learn about the nature of drugs. But laws that prohibit fraud, in addition to market-based incentives to provide evidence about the risks and benefits of drugs can also provide sufficient incentives to test and certify drugs. For example, a private company or public agency like the FDA could serve as an independent certification agency for pharmaceuticals, and insurance or public health care providers could refuse to pay for uncertified therapies.

Klugman also doubts that patients have the volitional capacities to make treatment decisions about pharmaceuticals. But again, it is unclear why people would have sufficient volitional capacities to make medical decisions in clinical contexts and for other potentially dangerous choices, such as the decision to drink alcohol or go rock climbing, but they are incapable of making choices about pharmaceutical use. On this point, Klugman cites the fact that some drugs are addictive, and that addiction can undermine volitional capacities. But even if this is true, it still isn’t clear that prohibiting people from buying or selling drugs is the answer, especially in light of the catastrophic health effects and enduring injustices associated with drug prohibition. Instead of prohibiting access to addictive drugs, which creates dangerous black markets and impedes treatment and recovery efforts, public health officials should instead focus on treatment and support for people who want to stop using drugs. A more permissive approach would also be more respectful toward informed and competent recreational users.

Klugman also calls people’s volitional capacities into question on the grounds that most of us are not rational, and even fewer patients are. He writes that “a sick person needs prompt help, not an opportunity o consider options, costs, benefits, and risks.” But this claim poses a false dichotomy because patients are helped when people give them the opportunity to consider their options and the authority to decide. It is distressing enough to lack control over one’s health due to an unavoidable illness, it is even worse to lack control due to an avoidable injustice like existing pharmaceutical regulations. And while I agree with Klugman that “rationality is compromised by the influence of others,” patients are not the only people subject to biases and irrationality. Public officials and physicians are people too. And they are also fallible. They are influenced by their own biases, electoral incentives, pecuniary incentives, concerns about liability, and ideology. The difference is that when a patient makes a misguided treatment decision, it is her own health she risks or harms and she doesn’t violate anyone’s rights. But when public officials make mistaken judgments about health policy and empower physicians to act as gatekeepers for treatment, they violate other peoples’ rights.  So even if people are fallible, given the choice between granting the authority to make intimate decisions about citizens’ lives either to citizens themselves or to public officials, all citizens should have rights of informed consent and self-medication. 

Another consideration that Klugman raises against rights of self-medication is that a person could make other people worse off by deciding to use a drug. It is surprising that Klugman invokes Mill’s harm principle on this point because Mill defended a conception of harm wherein restrictions on liberty were only justified to prevent the violation of people’s entitlements or non-consensual threats to important interests, not to prevent all activities that might make people worse off than they would have been. And in On Liberty, Mill argues that while public officials may legitimately enforce labeling requirements for drugs or registries for drugs that may be used in crimes, prescription requirements would be “contrary to principle” on the grounds that they violate liberty. Mill then writes, “to require in all case the certificate of a medical practitioner [for drugs] would make it sometimes impossible, always expensive to obtain the article for legitimate uses.”

In any case, Klugman references three kinds of harms to illustrate this point: the harm of antibiotic resistant bacteria, the harm of driving while intoxicated, and the harm that one person’s addiction can cause their family and coworkers. I agree that public officials can restrict access to pharmaceuticals to prevent the development of antibiotic resistant bacteria, as I noted in my previous response essay. I also agree that driving while intoxicated should be illegal, but in this case it is the driving that should be prohibited and not the intoxication. But I disagree that public officials or physicians can restrict patients rights of self-medication to prevent them from making their family and coworkers worse off, just as it would have been wrong for physicians to violate Jobs’ right to refuse treatment on the grounds that a prolonged illness would make people in his family and company worse off.

At this point in the response I would also like to briefly clarify and respond to some claims in Klugman’s initial response essay and in the most recent conversation piece. In his reply, Klugman claims that my “insistence that only the guiding concept of autonomy should be used in decisionmaking contradicts her acceptance of seat belt laws and other cases where harm to others could curtail its application.” But I do not accept seatbelt mandates, as I stated in the response and in the paper that I linked to in the response. I think that seatbelt mandates for adults are misguided and unjust. Klugman also claims I make a “factual error” in asserting that pharmaceutical innovation is responsible for some of the gains in life expectancy throughout the twentieth century, but this claim is supported by Frank Lichtenberg’s influential research on the topic, which I referenced in my initial essay, and which Klugman cites no reasons to doubt. He then writes that pharmaceuticals are not responsible for the largest increase in life expectancy, though I did not say they were. Klugman raises this point to cast doubt on my claim that deregulating for the sake of pharmaceutical innovation would be beneficial. But a reform can be beneficial and morally urgent even if it is not the most beneficial and morally urgent reform.

In closing, let’s turn to Klugman’s claims that “in all of philosophy, law, and history, there is no right to self-medicate.” Though Klugman is correct when he notes that rights of self-medication do not appear in the Declaration of Independence, it is false that the right lacks historical precedent. For example, Thomas Jefferson references rights of self-medication elsewhere when arguing in favor of freedom of conscience and against the establishment of a state religion.[1] And as Daniel Carpenter argues, the right of self-medication was widely acknowledged in the nineteenth century United States.

Though it is worth clarifying these points, I also think it is useful to step back and consider that Klugman raises these historical considerations to highlight the revisionary nature of my proposal, but throughout history many moral arguments lacked historical precedent and had revisionary implications for how we live. The fact that a moral argument in favor of greater respect for autonomy requires a departure from the status quo is not in itself a reason to reject it. Arguments in favor of expanding the scope of officials’ respect for autonomy often do. For example, officials rejected paternalistic justifications for oppression and implemented revisionary policies when they implemented legal protections for women’s rights, ended lawful slavery, or embraced the doctrine of informed consent. In all these cases, oppressors embraced paternalism and cited their principled commitment to values like health and wellbeing as considerations that weighed against freedom and respect. Today, coercive paternalism takes different forms, such as laws against recreational drug use, sex work, or self-medication. But the reasons against these policies remain the same. And as before, public officials and health workers still lack the authority to coerce people no matter how convinced they are that they know what’s best.



[1]Jefferson writes “was the government to prescribe to us our medicine and diet, our bodies would be in such keeping as our souls our now,” and then argues that because governments are so fallible, officials should not be empowered to coerce people in order to impose uniformity of opinion. I do not mean to suggest that Jefferson was a reliable moral guide more generally (he really wasn’t). Rather, I raise this point to in response to the implication that the American founders did not affirm rights of self-medication.

Also from this issue

Lead Essay

  • Physicians are ethically bound respect patients’ medical choices whenever patients wish to refuse care. Yet both they and government regulatory agencies are altogether willing to prohibit patients from taking medical interventions into their own hands. In particular, many drugs are unavailable without prescriptions, and this impinges meaningfully on patients’ rights to self-medicate. Jessica Flanigan argues that we should take these rights more seriously. The results, she argues, will include greater respect and trust in medical settings, better health outcomes, and improved overall wellbeing for patients.

Response Essays

  • Patients’ autonomy is a key principle of bioethics, says Alison Bateman-House, and with good reason. Yet others must also be protected, including justice and benificence. These principles mean that many of the regulatory safeguards of modern American medicine are indeed justified. Bioethics must never disregard autonomy, but it is far from the only consideration at hand.

  • Craig Klugman argues that in the field of medicine we need a measure of paternalism to keep from hurting ourselves and others. Doctors and pharmacists train intensively for years to develop an extensive knowledge of which therapies are best for which cases, and to know when they can and cannot be used together. Patients lack this knowledge. They also commonly lack the time to acquire any of it during an illness. As a result they often risk hurting themselves and others when they self-medicate.

  • Christina Sandefur argues that our system of drug regulation is fundamentally unjust: While some dangerous drugs are authorized government, whether with a prescription or without, some other drugs are not available by any legal means, even when patients are informed and willing to bear the risks. Regulation even goes so far as to prohibit certain parties from discussing off-label use of prescription drugs. These are not merely theoretical impositions, either, because individuals stand to live or die in consequence.