Should collection of sexual orientation and gender identity data be mandated?
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Yes.
To advance health equity, it is time to normalize the collection of sexual orientation and gender identity (SOGI) data in clinical practice and in health services research.
Approximately 5.6% of the population identifies as lesbian, gay, bisexual or transgender, although a recent global study indicated changing trends over time, with an average 10% of people across 27 countries identifying as LGBT and an additional 11% reporting being unsure or simply not reporting sexual orientation. In addition, an estimated 1.7% of the population have intersex conditions, or variations of male- or female-typical anatomy. That is roughly equivalent to the percentage of people born with red hair.
Thus, binary categories of sex and gender and conflated sex and gender are scientifically imprecise, with implications for clinical practice and health services research. Sex is based on chromosomes, whereas gender refers to social behaviors typically expected of men and women. Gender is not binary but falls along a spectrum with a great deal of room for androgynous, nonbinary and genderqueer expression. Research has shown that transgender and nonbinary individuals sometimes avoid health care due to past or anticipated discrimination, directly contributing to cervical cancer screening disparities among transgender men.
Additionally, presumption of heterosexuality damages the mental, psychological and social health of the nation. Attaching morality to sexual orientation is a legacy of European colonialism and is damaging to the health and well-being of both queer and straight people. Indigenous populations embraced nonbinary gender and same-sex partnering. Psychology has shown that although ingroup identification is a normal process of social identification that helps individuals make sense of their place in society, out-group discrimination is caused by perceiving those not in the “in group” to be threatening.
European colonizers saw queer expression as threatening to the Christian moral code and responded by regulating indigenous gender and sexuality to enforce political domination. Thus, homosexuality was pathologized as a psychiatric disorder in the U.S., with gay people forced into psychiatric hospitals where they were subject to experimentation (such as testicular transplantation and lobotomies) throughout most of the 20th century. In 1973, the American Psychiatric Association removed homosexuality as a psychiatric disorder, but WHO did not remove homosexuality from the International Classification of Diseases until 1990. This policy change had immense health repercussions, including the repeal of sodomy laws and legal protections for LGBT, queer and intersex (LGBTQI) people.
Although clinicians are sometimes reticent to collect SOGI data, patients generally have been responsive when asked about SOGI in clinical settings. To address clinician discomfort and ensure appropriate use of SOGI in clinical care, training regarding the relevance of SOGI data to the health and health care of patients must accompany SOGI data collection. Training also must include potential health risks of LGBTQI subgroups while countering stereotypes of LGBTQI people. Importantly, many LGBTQI people are stealth in health care and in everyday life, particularly older generations, due to experienced discrimination and/or health care denial. Patient confidence in fair and equitable treatment and clinician comfort in asking about SOGI will not occur until SOGI is normalized as important sociodemographic data to inform community health assessments and individual health management strategies.
- References:
- Amnesty International. It’s Intersex Awareness Day — here are 5 myths we need to shatter. Oct. 26, 2018. Available at: www.amnesty.org/en/latest/news/2018/10/its-intersex-awareness-day-here-are-5-myths-we-need-to-shatter/. Accessed Aug. 24, 2021.
- Cochran SD, et al. Bull World Health Organ. 2014;doi:10.2471/BLT.14.135541.
- Drescher J. Behav Sci (Basel). 2015;doi:10.3390/bs5040565.
- Gallup. LGBT identification rises to 5.6% in latest U.S. estimate. Feb. 24, 2021. Available at: news.gallup.com/poll/329708/lgbt-identification-rises-latest-estimate.aspx. Accessed Aug. 24, 2021.
- History. Gay conversion therapy’s disturbing 19th century origins. June 22, 2018. Available at: www.history.com/news/gay-conversion-therapy-origins-19th-century. Accessed Aug. 24, 2021.
- Picq ML and Tikuna J. Indigenous sexualities: Resisting conquest and translation. Aug. 20, 2019. Available at: www.e-ir.info/2019/08/20/indigenous-sexualities-resisting-conquest-and-translation/. Accessed Aug. 24, 2021.
- Pratt-Chapman ML, et al. PLoS One. 2021;doi:10.1371/journal.pone.0246883.
- Sampasivam S, et al. Int J Environ Res Public Health. 2016;doi:10.3390/ijerph13060616.
- Simon Rosser BR, et al. LGBT Health. 2021;doi:10.1089/lgbt.2020.0256.
- Spitzer RL. Am J Psychiatry. 1981;doi:10.1176/ajp.138.2.210.
- Tabaac AR, et al. Am J Prev Med. 2018;doi:10.1016/j.amepre.2017.11.009.
- World Economic Forum. 6 charts that reveal global attitudes to LGBT+ and gender identities in 2021. June 21, 2021. Available at: www.weforum.org/agenda/2021/06/lgbt-gender-identity-ipsos-2021-survey/. Accessed Aug. 24, 2021.
Mandi L. Pratt-Chapman, PhD, MA, is associate center director for patient-centered initiatives and health equity at George Washington University Cancer Center. She can be reached at mandi@gwu.edu.
No.
More work on nonbinary gender labels is necessary before mandates can be considered. To reason about mandates for collection of SOGI, we need a shared understanding of the benefits, as well as the risks.
The risks are obvious and include discrimination (intentional bias) and unintentional bias. An example of unintentional bias would be less care for unrelated medical problems when the chart also shows a history of mental or behavioral differences. Other risks include anxiety as an individual transitions their internal and external persona and the risk for abuse of government power after political transitions. Whether collection is mandated or ad-hoc, these risks remain and can be somewhat mitigated through health records segmentation, transparency of access and effective privacy controls.
Potential benefits of collecting SOGI data arise in the context of precision or personalized medicine. Considering gender, for example, can help interpret diagnostic tests and can inform therapeutic choices. In a research context, controlling for gender improves the ability to discern relevant science. Forcing a binary gender choice when a binary choice does not reflect the physical, mental or social reality for an individual is confusing. It also slows clinical, research and policy progress. Adding an opt-out category, such as “prefer not to say,” to the binary male or female does little to improve the situation. As we begin to recognize that gender is not binary, all of us would benefit from new gender-related labels if the labels are effectively designed and the risks are sufficiently mitigated.
Rational or science-based design of nonbinary gender labels is not obvious and needs to be done before mandates for such labels are even considered. If the labels are not clear and meaningful, their introduction could be even worse than forcing a binary choice. For example, if too few or too many gender labels are standardized, the benefits are obscured. Also, if the labels themselves are misnamed, it may have negative social and economic impacts through prejudice and marginalization. So, who decides?
Organized patient communities and social supports will be an essential component of effective gender labeling, as will the methods for mitigating the risks and harms of gender labeling. The impact of the international, grassroots political group AIDS Coalition to Unleash Power (ACT UP) on HIV treatment and prevention is a good example of community leadership. Decisions related to nonbinary gender labels and protecting the minorities that would result cannot be left to the experts, no matter how ethical and well-meaning they are. As people are allowed to voluntarily join the communities that best serve their interests, the science of gender subsets and labels will advance and the mandates, if any, will help drive improvements in the health of people and our society.
Adrian Gropper, MD, is chief technology officer at Patient Privacy Rights. He can be reached at agropper@patientprivacyrights.org.
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