The Danger in Filling Out “Organ Inventory” Forms

If you’re living in a state where abortion is restricted, you may find signs posted around the doctor’s waiting room reminding you that it is illegal for your medical provider to facilitate an abortion. In reception, you will likely be given paperwork to fill out that includes a list of reproductive organs with check boxes beside them. This “organ inventory” tracks your gender, sex assigned at birth, and, if you’re assigned female at birth and have been pregnant before, the number of pregnancies versus live births you may have carried. It also lists questions about sexual preference.  

Whether you’re trans, queer, or a cishet woman, if you’ve terminated a pregnancy or had a miscarriage, you have three options in approaching the organ inventory: You can be forthcoming regarding your reproductive organs, knowing that the receptionist and possibly other people in the waiting room will see your information. You can withhold that information, which will likely impact your medical care. Or, you can opt out of filling out the organ inventory, which has a similar effect as being transparent in an environment that has criminalized gender-affirming care and abortion. You won’t find an organ inventory questionnaire in every waiting room of every state where abortion has restrictions or is outright banned. In some cases, your doctor might take inventory verbally; if you’re cis and straight, you might not have noticed when you did fill it out. 

“Staring at that form in a waiting room filled with people who very likely don’t accept me, I realized I’d be handing it into the office staff — not my new therapist,” said Sarah,* a 19-year-old transgender woman, describing the questionnaire, which was folded into her intake paperwork when she started mental health therapy last year. “This was information I’d share with my therapist when I was ready. Why would a straight, cis person decline to answer? I asked the office staff what they would do with this paper, and they said it’d be scanned into my file where people wouldn’t see it. That didn’t make sense to me either. Why would you ask these questions if nobody would see it?” 

Sarah said this experience, coupled with the law that restricts gender-affirming care for minors, which was just upheld by the Supreme Court, was the reason she fled Tennessee. “I’ve been on hormones since I was 16.  But the way doctors are collecting data about cis women and trans people increasingly made me feel unsafe.” 

Anatomical inventories were created with good intentions, framed as gender-affirming care by the HIPAA-protected notation system, EPIC, since at least 2017. In a just world, collecting this data would allow medical professionals to offer more appropriate and specific care for all patients, regardless of their gender identity. For example, I had my fallopian tubes removed in 2018, so there’s no reason for me to ever take a pre-operative pregnancy test. Avoiding this test saves time and money. 

It seems like a practical measure, but in states where anti-trans laws and anti-abortion laws threaten access to basic and lifesaving healthcare, the data compiled in organ inventories poses a significant safety risk to anyone who has ever identified as, or is believed to be, a woman. Last fall, three pregnant women died after being denied medical care during a miscarriage, and hundreds have reported being turned away in similar situations in red states.

There’s also no reason this data should be collected at unrelated medical appointments. “What stands out to me is the setting,” said Judith*, an MSW who works in mental health. Judith described working in a red state where she’s witnessed organ inventories used in clinics that have nothing to do with reproductive health. “Why does a podiatrist or dermatologist need to know your sexual preference or gender identity?” 

Doing so opens the door to conversations about gender that the trans person or woman seeking medical care may not need or want to have. In a red state with anti-trans and anti-abortion laws, it’s an opportunity for bias. “People in other communities don’t realize that the majority of people here are not accepting of trans people,” said Judith. “While I can see the benefit of not having to tell the story of your transition at every doctor’s appointment in a more accepting place, if you’re going to the doctor for a sinus infection, it really isn’t necessary for trans people to put themselves at risk of biased medical professionals. People in red states don’t have the luxury of just knowing that trans people are not going to be treated poorly.”

 For years, studies have shown that bias against cis women and transgender individuals significantly reduces the quality of care. In Tennessee the 2025 Medical Ethics Defense Act paved the way for an unmarried pregnant cis woman to be denied care because the doctor objected to her lifestyle. Adverse experiences with biased doctors also causes trans folks to delay needed medical care. In states where abortion is banned, the quality of women’s healthcare has diminished as well. Now that the Trump administration has started to withdraw EMTALA — Biden-era guidance that affirmed the obligation of hospitals to provide emergency medicine, even if that care conflicts with state laws — the capacity for a physician to make biased medical decisions is federally sanctioned. 

Thorne Melcher, a technologist and trans woman living in Atlanta, described growing increasingly reluctant to share her gender with doctors, referencing the “trans broken arm syndrome,” a type of discrimination where medical providers incorrectly attribute unrelated problems to gender identity.

“They want to attribute everything to stuff like hormones rather than tackle the real issues,” Thorne said. “This is even true when I bring up things that predated my transition, such as my tendency to get migraine auras. Doctors don’t need to know your ‘birth sex’ to treat you appropriately. In my experience, knowing that is precisely what makes them stop trying to properly diagnose me.”

BJ Ferguson, a queer trans journalist, expressed a similar sentiment. “In cases where I’m receiving specialized medical care, I also risk with every disclosure losing access to that care because a provider is transphobic or worse.”

At best, there have been enough historical adverse experiences in the medical field to make trans people, cis women, and people who can get pregnant feel afraid to seek care. At worst, that fear is realized when medical professionals weaponize their bias, refusing to treat women in one of the 13 states where abortion is illegal, or trans people in one of the 26 states with laws restricting gender-affirming care.

To unravel how we got here, we have to zoom out and consider a kaleidoscope of laws and policies that have coalesced to turn clinics in red states into hostile environments. 

Similar to conservative gerrymandering, the right-wing manipulation of access to healthcare is messy and diffuse. We already know doctors are fleeing red communities, and trans kids and people who can get pregnant aren’t receiving life-saving medical care because of healthcare criminalization laws. Jami Schreuder lives in Tennessee with her husband and child. Her son is trans and still in high school. “It was already hard to find care here. Then Tennessee passed the law restricting minors from gender-affirming care. My son’s therapist was supportive, but she was afraid to even write him a letter in support so we could get care in surrounding states where it was still legal. Then, one by one, the states around us started to limit care, too. Now, we’d have to go to the West Coast, which we really can’t afford.”

In the past, LGBTQ+ clinics, like the one at Vanderbilt University, were hubs for safe, unbiased care for trans people. Then, Vanderbilt received a federal slap on the wrist for medical privacy, or HIPAA, violations when it responded to the Tennessee AG’s request to share medical records for trans patients purportedly to support a “criminal case.” The fall of Roe v. Wade opened a portal to justify sharing potentially “illegal” abortion information about women in the same way. 

“HIPAA allows such disclosures without patient consent when law enforcement is involved, a loophole that becomes especially dangerous when policies criminalize reproductive or gender-affirming care,” said Zachary Schulz, a public health historian who focuses on systems, policy, and access. 

In order for patients to give consent, they have to be fully informed. But the haunting saga of hospital monopolies in red states shows that this doesn’t always happen. These conglomerates can perpetuate manipulative data collection, healthcare bias, significantly increased costs, and substandard care.

Ballad Health, a 20-hospital system, is the only hospital care option for over 1 million people in 29 counties across Virginia, Tennessee, Kentucky, and North Carolina — and a poster child for medical totalitarianism that’s spreading through rural America. Ballad Health is the country’s largest state-sanctioned hospital monopoly, thanks to Certificate of Public Advantage (COPA) laws, described in a report from the Federal Trade Commission as “[an] attempt to immunize hospital mergers from antitrust laws by replacing competition with state oversight.” 

The FTC does not recommend the use of COPA. They warn that “studies show that several hospital mergers subject to COPAs have resulted in higher prices and reduced quality of care, despite regulatory commitments designed to mitigate these anticompetitive effects.” Since Ballad was created in 2018, it’s been heavily protested by several of the affected communities. The state of Tennessee has taken note of and tried to mitigate the significant decrease in quality of care. “I used to work for Ballad and even I’m afraid to be taken to a Ballad facility for emergency care,” said Judith.

Recently, Ballad Health began taking organ inventories. These organ inventories are visible to all providers in their massive medical complex. Perhaps as a preemptive way of protecting themselves from Vanderbilt’s fate, Ballad now asks all patients to sign a “Health Information Exchange” document during intake, allowing their doctors to share records with “other healthcare providers and other entities.” 

Other healthcare providers and other entities are not defined. At the end of the form, consequences for opting-out are defined: Your doctor may not have enough information to treat you. The subtext: Share your medical information, or else.

Ballad is also slowly partnering with some of these “other entities,” like a prominent medical college, increasing the thousands of medical professionals who have legal access to records, even if the form is not signed. When a hospital conglomerate grows, so does the population of people who can sign into the electronic medical record and access patient data. 

“When a single, dominant hospital system in a region starts tracking detailed reproductive or gender-related data — like organ inventories or pregnancy outcomes — in states where abortion or trans care is criminalized, it creates serious risks,” said  Schulz. “Even if these data collections are nominally for clinical coordination, in the current political environment, they can function as surveillance tools. Add in vague data-sharing agreements like “healthcare exchange” with unspecified partners, and patients lose any meaningful control.” 

If I were a Ballad patient, whether I went to a dermatologist, an ENT, or to get a routine physical — all of my doctors would know that I have had my fallopian tubes removed. They would also see that I’ve had three live births to my four pregnancies. What they wouldn’t know is that my fourth pregnancy ended in a stillbirth — or very late-term miscarriage — that nearly killed me.

Folks who read my chart could draw their own conclusions about how and why I removed part of my uterus and once failed to deliver a living child, which is the absolute smallest, but still significant, danger of softening medical privacy in a country where the sentiment behind “your body, my choice” gets much more social and political attention than “do no harm.”

If not to support gender-affirming care, as the inventories were originally intended, why are Ballad Health and other hospital systems collecting this information? If a hospital system decides that basic healthcare for certain populations of residents should be restricted, why would it increase the data collection around that population, specifically, if not to find ways to further restrict their care?

Other than the usual rising costs and diminishing quality of care that happens when COPA laws permit medical monopolies, there aren’t yet any specific victims of this blitz on privacy — that we know of. “We’re now at a point where efforts to improve health data interoperability — which sound beneficial — can also expand the reach of these surveillance systems,” said Schulz. “ The Electronic Frontier Foundation has warned that these systems can prioritize data access over privacy, and proposals like RFK Jr.’s ‘medical freedom database,’ despite their branding, could easily become tools for broader monitoring or enforcement.”

“I feel safer now living in a blue state,” said Sarah, “but I know it’s temporary. My information is in the system, and anti-trans laws are spreading.”

As a cis woman and mother, I feel the same way. When it comes to organ inventories and healthcare information exchange documents, we are at the beginning of the story. But we can imagine scenes playing out based on things that have already happened in our politically divided society: A pregnant woman is hemorrhaging and goes to the hospital, but nobody will treat her because they are worried about her miscarriage being framed as an abortion. Or, a trans person goes to the doctor, and is refused treatment because the doctor is afraid of being accused of providing “gender-affirming care.” Or, because they hold religious beliefs that supposedly conflict with gender-affirming care, and the political atmosphere emboldens them to act against the terms of their medical license. Or, one of the thousands of employees in a hospital monopoly opens the medical chart of a former romantic partner, finds evidence of a possible lost pregnancy, and reports them to the police.

These awful (and preventable) events hide a larger threat. When medical records are demanded for “criminal cases” against patients, it begs the question: Who are the real criminals? The terrifying truth is, new laws could easily allow politicians to control that narrative and use old data to persecute entire communities.

*Names have been changed by request of the subjects.