Data used to categorize individuals for identification, records matching, and other purposes.

Data Element
Variation in Sex Characteristics
Description

Were you born with a variation in your physical sex characteristics? (This is sometimes called being intersex or having a Difference in Sex Development, or DSD.)
 No
 Yes, my chromosomes, genitals, reproductive organs, or hormone functions were observed to be different from the typical female/male binary at birth and/or I have been diagnosed with an intersex variation or Difference of Sex Development
 I don’t know
Source: Intersex Data Collection: Your Guide to Question Design. interACT: Advocates for Intersex Youth. 2020. Accessed September 29, 2022. https://interactadvocates.org/intersex-data-collection/
Submitted By: Sean Cahill / Fenway Health
Data Element Information
Use Case Description(s)
Use Case Description Adding a sex characteristics question allows for measurement of intersex status, or differences in sexual development. According to InterACT, about 1.7% of people are born intersex. Some 1 in 2,000 babies (0.05% of humans) are born with genital differences that a doctor might suggest changing with unnecessary surgery. (These estimates are based on work by Dr. Anne Fausto-Sterling, who reviewed medical literature from 1955-1998; Sexing the Body: Gender Politics and the Construction of Sexuality, 2000). Intersex people may have differences in genitalia, gonads, sex chromosomes, and reproductive ducts. The Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health (American College of Physicians, 2015) has a helpful chapter on medical care of intersex patients. Key health care issues affecting intersex individuals are: sexual function and satisfaction; fertility; therapy to support psychosocial adjustment; and sensitive, affirming, and culturally competent care. Adult intersex individuals grew up when standard medical practice was to subject intersex children to irreversible genital surgeries without their consent or full knowledge. Intersex advocates for decades have decried these surgeries as unethical (Ittelson A, Fraser S, and Levasseur MD (2018). Providing Ethical and Compassionate Health Care to Intersex Patients: Intersex-Affirming Hospital Policies. InterACT and Lambda Legal). Intersex people experience significant medical mistrust, and may experience health disparities (Organisation Intersex International Europe. Covid-19 Survey Report. Published December 9, 2020. Accessed December 17, 2020. https://oiieurope.org/covid-19-survey-report/).

Variations in Sex Characteristics data can be used to improve quality of care for intersex patients. They can be used to manage population health, to ensure for example that intersex patients are accessing care, preventive screenings, at levels consistent with patients who are not intersex. Given negative experiences with the health care system and high levels of medical mistrust, this is important for health equity.
Estimate the breadth of applicability of the use case(s) for this data element This could be either Level 1 – elements pertain to many, but not most of patients, providers or requestors or Level 2 – elements pertain to most or all patients, providers or requestors. The intersex population is relatively small, but many if not most health care providers will have intersex patients. The number of stakeholders who would capture, access, use or exchange this data element is quite large.
Link to use case project page https://interactadvocates.org/intersex-data-collection/
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) LOINC has an intersex response option, 99502-7, for Recorded sex or gender. LOINC has an intersex response option. We do not endorse the way LOINC conceptualizes intersex (as corresponding to an X response to a sex or gender question).
https://loinc.org/loinc/99502-7/
Additional Specifications N/A
Current Use In limited use in production environments
Extent of exchange 5 or more. This data element has been tested at scale between multiple different production environments to support the majority of anticipated stakeholders.
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) None
Restrictions on Use (e.g. licensing, user fees) None
Privacy and Security Concerns Any such concerns would be similar to those related to sexual orientation, gender identity, and other demographic elements.
Estimate of Overall Burden Since this measure would be self-reported by the patient and doesn't involve any physical measurements or numerical-value response options, the burden would be similarly minimal to that for other comparable patient-reported items, including sexual orientation, gender identity, and other demographics.
ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 1 - Data element is captured, stored, or accessed in at least one production EHR or HIT module.
Criterion #3
Maturity - Current Exchange		 Level 1 - Data element is electronically exchanged between two production EHRs or other HIT modules using available interoperability standards.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 1 - Use cases apply to several care settings or specialties.
Evaluation Comment Thank you for your submission. The rationale for Level 1: data element is not yet exchanged or supported as desired by LOINC.

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