Collection of transgender data is about health, not privacy

Recently, the Florida Office of Planning and Budget issued a memo requesting that state universities share health information about specific services provided to people with gender dysphoria.

The American Psychiatric Association defines gender dysphoria according to specific criteria summarized as distress when a person’s birth sex does not match gender identity, a desire to be the other gender, be treated as the other gender, or to be rid of one’s sex characteristics.

There appears to be confusion about what the order is requesting, how privacy laws apply, and the reason for requesting health information.

The memo requests aggregate information about specific medical services broken down into discrete categories, such as sharing the number of individuals who were prescribed puberty-blocking drugs, prescribed hormone medications, or underwent surgical procedures. It also requests information on the number of individuals who underwent behavioral health services and length of those services before obtaining “sex-reassignment treatment” including medications or surgery. The memo specifically directs universities not to share identifiable patient names or details.

It is important to understand that the state already collects patients’ health information in many other circumstances. This practice is common in medicine and public health, and people are likely unaware of all the instances where this occurs.

People may question how health privacy laws such as the Health Insurance Portability and Accountability Act (HIPAA) would apply. HIPAA is designed to protect against certain disclosures of patient names, medical record content, and specific details to people who don’t have authorization to see it. However, certain laws gives different state agencies authority to collect many types of health information for public interest purposes.

Both HIPAA and state laws define public interest purposes when state entities can use people’s health information without patient permission.

States engage in many efforts to collect medical information that has been de-identified, such as tracking and monitoring disease trends. “De-identified” information means removing specific details such as the patient’s name, Social Security number, and medical record number.

One example of this is the Florida Environmental Public Health Tracking Program, which analyzes information on specific types of cancer separated by age, sex, race, and county. Programs like these collect population level data, provide surveillance of cancer trends, and assess whether environmental exposures affect developing cancer. Florida Department of Health also collects de-identified medical record information for many other purposes, including to study rates of chronic disease, asthma, and suicide. HIPAA also sets forth standards for collecting identifiable patient information. Florida, like many other states, has a prescription drug monitoring program. This is a centralized database that physicians check before prescribing controlled substances, such as OxyContin, Adderall, or Xanax. Physicians are also legally required to report details such as patient name, drug, and dose.

Assessment — or even scrutiny — of treatment interventions does not necessarily signal animus toward a specific patient population. Treatments to alleviate mental distress, hormone therapies, and surgical procedures that result in sterilization have all historically been the subject of intense medical debate.

Similarly, decades ago the Women’s Health Initiative halted clinical trials on the health effects of hormone replacement therapy (HRT) for postmenopausal women when researchers discovered HRT increased risk of stroke, heart attack, dementia, and certain types of cancer. Even today, prescribing HRT remains a contested topic.

Finally, treatments that may result in sterilization merit an additional layer of scrutiny based on irreversibility and the fundamental importance of procreative liberty. In the late 1800s, some physicians argued hysterectomies provided a cure for psychological distress, and the U.S. bears the dark stain of involuntary sterilization “treatments” during the eugenics movement.

State collection of health information and potential future research can ideally help clinicians better understand the increase in occurrence of gender dysphoria; track interventions used for treatment; and evaluate treatment benefits, risks, and effectiveness. Current treatments for gender dysphoria may include behavioral therapy, medication, or surgery. Clinicians must have accurate information to determine what types of treatments will best help patients to alleviate distress and discomfort in a compassionate way.