Bodily Autonomy and Individual Rights; Subtitle: Showcase Panel IV: Law, Science, and Public Policy
Last month, I spoke on a panel at the Federalist Society’s National Lawyers Conference about “The Law, Science and Public Policy.” I focused my remarks on the area of medicine, and why it is morally and constitutionally imperative that we choose individual autonomy over “science-based” paternalism.
Medical autonomy is not only a cornerstone of medical ethics; it is also one of the most basic building blocks of freedom, guaranteed by our Constitution. If you own yourself, then you have the freedom to make these personal intimate decisions. Otherwise you are not truly free to exercise any of your other rights.
There’s a long line of cases that supports this notion of medical autonomy. The Supreme Court has recognized one’s right to refuse life-saving treatment and unwanted bodily intrusions, as well as one’s right to care for one’s own health and seek out the doctor of one’s choice. Lower courts have followed suit, even recognizing one’s right to choose to cut their own hair.
Unfortunately, government has largely grown to ignore these decisions, increasingly prioritizing the preferences of public policy decisionmakers or scientists at the expense of every person’s right to shape his or her own destiny. This is fundamentally inconsistent with the principles of freedom and human flourishing. After all, the right to live as we see fit is what makes life more than mere existence.
Medical paternalism treats individuals as children who should be protected from making the “wrong” decisions. But free people must be free to make bad decisions—and enjoy the rewards or suffer the consequences. Otherwise, they are not free.
Questions about how we choose to live our lives are not really scientific or medical questions at all. Science answers questions about reality, but it does not answer questions about how people should deal with this reality. And scientific experts may be experts in their field, but they aren’t experts on people’s individual values or risk-tolerances. For example, in the context of medicine, whether a drug is acceptably risky for a particular person to take is not a medical or scientific judgment—it’s a normative judgment that varies from person-to-person, depending on factors such as their circumstances, risk-tolerance, and the benefits that they expect to derive from taking that treatment.
This is why government officials cannot just “follow the science” to make effective public policy. Bureaucrats cannot determine whether the risks of trying a drug outweigh the potential benefits for an entire population, as individual people have different values.
Thus, political decisions about science and medicine are often arbitrary. For example, we have a system that allows people to end their lives with a doctor’s help, take dangerous medicines (chemotherapy is essentially poison, and even acetaminophen kills more than 400 each year), and be paid to test medicines that could be fatal. Yet in many cases, the same system forbids people from trying medicines that might cure their disease or alleviate their suffering.
“Following the science” is also impossible because nobody has perfect information. No system can ensure against all risks. People will sometimes make uninformed choices, or choices that strike others as misguided. But government is not immune from this. Officials have their own biases, motivations, incentives, risk/benefit tolerances, and limited knowledge. The question is: Who should decide what level of risk is “acceptable” to patients—the government, or the patients themselves? When government officials make decisions for people based on the official’s own preferences, it violate people’s rights. But when patients make a healthcare decision for themselves, it doesn’t violate anyone’s rights. The consequences are the individual patient’s alone.
This is especially important when government censors or withholds scientific information. Today, federal laws and regulations not only block patients from making their own treatment choices—they also take away the tools patients and doctors need to make informed choices.
Take, for example, the context of off-label treatments, which are treatments that are prescribed for purposes, patients, or dosages different from what the FDA originally approved. Although the treatments are legal (and off-label prescriptions are quite common), manufacturers can be subject to criminal penalties for sharing truthful, non-misleading information about these treatments. This ultimately prevents patients from getting the best possible care. It also violates the First Amendment.
Indeed, for decades courts have said that the Constitution protects a company’s right to share information about off-label uses. Unfortunately, the FDA has developed a disturbing practice of settling these cases or otherwise preventing the courts from making clear just when and how drug companies can share information. In fact, after the Second Circuit said in U.S. v. Caronia that truthful off-label speech is protected by the First Amendment, the FDA literally ignored the ruling, saying it would not change the way the Agency prosecutes speech.
Thus, medical paternalism stifles communication and innovation, leaving doctors and patients in the dark. But as the Supreme Court put it forty years ago, “information is not in itself harmful . . . people will perceive their own best interests if only they are well enough informed, and . . . the best means to that end is to open the channels of communication rather than to close them.”
It wasn’t always this way. Federal drug regulations focused at their inception on ensuring that products marketed to the public were safe and correctly labeled, so that patients had truthful information to make informed decisions for themselves. But over time, rather than empowering patients and doctors to make their own decisions, government has become the decisionmaker, limiting speech and action in the name of “science.”
This system is at odds with the principle of medical autonomy. We must stop justifying medical paternalism as government “following the science.” Instead, we should focus on constraining the scope of government action within its constitutional limits, always beginning with the presumption that individuals are free to make intimate, personal health decisions for themselves.
Note from the Editor: The Federalist Society takes no positions on particular legal and public policy matters. Any expressions of opinion are those of the author. To join the debate, please email us at firstname.lastname@example.org.