In America, is bodily autonomy a human right?
Opinion by Alexis Drutchas
So far this year, according to legislative tracker Freedom for all Americans, 22 state legislatures have considered bills to prohibit or impede transgender youth from accessing gender-affirming care.
Last month, the US Supreme Court announced it would hear a case on a controversial Mississippi law that challenges the right to abortion established by Roe v. Wade. And in April, a bill that would provide terminally-ill patients in Connecticut the ability to receive medical aid in dying failed to win support from the state’s judiciary committee after opponents, such as the Catholic Church, argued that the bill encouraged suicide.
When it comes to American law and politics, transgender health, abortion access and aid-in-dying options for patients with terminal illnesses may seem like separate issues. But as a board-certified physician in both family medicine and palliative care, I see the same fundamental question of human rights underpinning each one: Do adults with capacity hold the ultimate authority over their own bodies and the medical decisions for their minor children, or don’t they?
Today, the notion that patients have the right to make decisions about their own care is a central tenet of the medical profession. This wasn’t always the case; medicine in the US was once an overtly paternalistic profession. The creation of the Nuremberg Code in 1947 helped establish the importance of voluntary informed consent, and public knowledge of exploitive experiments, such as the Tuskegee Syphilis Study and James Marion Sim’s gynecologic surgeries on unanesthetized enslaved Black women, helped change medical values in the US. By 1979, “The Principles of Biomedical Ethics” enshrined patient autonomy as a guiding principle of contemporary medicine.
Nowadays, clinicians recognize that patients are individuals with their own distinct needs and values. Accordingly, these health care professionals provide optimal care within a framework of informed consent and shared decision making. As a physician, my moral judgement does not factor into this; rather, my duty is to understand my patients’ goals and values and ensure they have all the information needed to make the best possible decision.
In the United States, the right to accept or refuse treatment is protected by law, a position endorsed by the American Medical Association. Yet when it comes to certain decisions about bodily freedoms — like aid in dying, transgender health and reproductive rights — some politicians seem to think they need to protect people from their own choices — even though these are no more or less consequential than many other autonomous decisions.
Medical care cannot have a one-size-fits-all approach because no two individuals are exactly alike. As such, bodily rights and choices should not be dictated by legislators who are unfamiliar with both a patient’s specific situation and the daily practice of medicine. Additionally, this corporeal legislating is belittling and acts against the very ethical principles that clinicians strive to uphold.
Often the lawmakers introducing these bills, like Republican Gov. Greg Gianforte (who’s hoping to add new restrictions on abortions in Montana) or Texas Gov. Greg Abbott (who signed the “heartbeat bill,” which bans abortion providers from performing the procedure if a heartbeat is detected, into law last month), are white, cisgender, heterosexual men. Maybe that is a coincidence. Maybe it’s not. But I find it curious that this newly proposed legislation takes such a paternalistic stance; suggesting that there are “right and wrong” choices rather than acknowledging that individuals have unique needs and the autonomy to make decisions that are right for them. As Paxton Smith, a high school valedictorian from Texas whose speech condemning Gov. Abbott’s bill has gone viral, put it: “I hope you can feel how gut-wrenching it is, how dehumanizing it is, to have the autonomy over your own body taken from you.”
The continued promotion of paternalistic ideologies can frequently be traced back to religious fundamentalism. Former Vice President Mike Pence, who backed restrictions on abortion, for example, was seen by some fundamentalist leaders as (to borrow language from Richard Land, the president of the Southern Evangelical Seminary) “a 24-karat-gold model of what we want in an evangelical politician.” These proposed restrictions are often offered under the guise of protection, using misinformation about harm to drive legislation forward.
This idea of harm is one some readers may point to and say — see, abortions or providing transgender youth with hormones “causes harm” and so we need laws to “protect” these individuals. This is exactly where it’s important to recognize the true nature of autonomy. As a physician, my responsibility and ethical obligation is to my patient’s well-being, and what one person considers “harmful” may be lifesaving for another. Countless studies show that the more we restrict access to legal abortions the higher the risks for those seeking abortion services becomes. Moreover, a 2020 study published in Pediatrics found that transgender youth who received puberty blocking treatment had lower odds of lifetime suicidal ideation compared to those who wanted the treatment but didn’t get it.
To be sure, safety mechanisms must be in place to ensure that patient autonomy drives sound medical decisions — and they already are. The Pediatric Endocrine Society, American Academy of Pediatrics, and the World Professional Association of Transgender Health, have published standards of care for the transgender community that are widely embraced by providers. Individuals seeking abortions can request options counseling. And in states like Oregon, where it’s legal for patients to seek aid in dying, a detailed set of legal protocols are in place to ensure this medical support isn’t misused. These important checks and balances are not the same thing as legal limits on rights, a distinction that is essential to recognize.
Obviously, there are times when adults do not have capacity to make informed decisions. In these circumstances we rely on an individual’s health care proxy or court-appointed guardian to work closely with the medical team. On occasions when a medical team and the patient (or the patient’s decision maker) do not agree on the best and safest path forward, an array of specialists can provide counsel and support.
If history is a guide, some conservatives tend to feel differently when faced with these situations personally. A Christian father, for example, who had initially denied his child’s gender identity, recently spoke before the Missouri House of Representatives in support of his transgender daughter. But we shouldn’t have to wait for these personal reckonings to understand that legislation should acknowledge the wide breadth of human experience and uphold patient autonomy as well as the sanctity of the physician-patient relationship, rather than be written from a place of inexperience or misinformation.
Instead, we need to invite empathy back into our legislating, much like former California Gov. Jerry Brown demonstrated when he signed the End of Life Option Act in 2015. As a former Jesuit seminary student, Brown was deeply conflicted and stated, “I have considered the theological and religious perspectives that any deliberate shortening of one’s life is sinful.” He went on to say, “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill,” he wrote. “And I wouldn’t deny that right to others.” His sentiment showed tremendous empathy without moral judgement. This is such an easy thought experiment that is all too rare in our world today.
The culture war between conservatism and liberal views may not be new, but it’s time we note the common thread in bills seeking to restrict the bodily rights of others — especially individuals who are already marginalized. These bills do not protect or help anyone; they only redirect power away from the individual and make it harder for clinicians to provide patient-centered care.
Perhaps at the core of transgender, reproductive and medical aid-in-dying rights the central question is not only about human rights but also about empathy: In America, do competent adults hold autonomy over their own bodies and the medical decisions for their minor children, or are we willing to let legislators deny these rights to some people?
