Collecting Sex and Gender Data

The difference between sex and gender can be confusing, but it’s important to make this distinction in your data collection. Using proper wording can enhance your study’s transparency and reproducibility, as well as provide sensitivity to varying identities. Let’s clarify the difference between the two:

  • Sex is a biological variable defined by characteristics encoded in DNA. Often when referring to sex with human participants, you’re talking about sex assigned at birth.
  • Gender refers to social, cultural, and psychological traits linked to humans through social and historical contexts.1 2 While gender has historically often been referred to as a binary (male vs. female), both researchers and the general public increasingly view gender as a spectrum of identities.

For many individuals, sex and gender identity will be the same, but this is not true for all individuals. If both sex and gender data are needed, asking two simple separate questions is the best way to get this information.

Collecting Sex Data:

a. Ask respondents to indicate “sex assigned at birth:” or “sex on birth certificate:”

b. Responses:

  • Male
  • Female
  • Decline to answer

If you’re working on a study funded by the National Institutes of Health (NIH), you will need to report sex data along with race/ethnicity data to ensure that subjects are not being excluded based on minority status. While NIH guidelines have not yet expanded to separate gender from sex data collection, research standards generally are moving toward requiring this type of data collection.

Collecting Gender Identity Data:

While there are no valid, agreed-upon tools for collecting gender identity information, there are ways to collect it clearly and sensitively:

a. Either ask: “how do you identify your gender” or “Do you consider yourself…”

b. Responses:

  • Male
  • Female
  • Trans male
  • Trans female
  • Gender non binary
  • Genderqueer
  • Different identity:____ (avoid using “other” here)

You can use a free-text field with branching logic to allow those with identities not listed to fill in a different identity.

As with all data collection, it’s important to think about your analysis plan when collecting sex and gender data. If you’re running a study in which gender data is an important factor, you may want to collect more specific or expansive gender-related information from your respondents.

Though we’re working mainly with child populations here at CHOP, it’s still important to consider these issues. Many of our patients and research participants are adolescents, and even younger children can have gender-expansive identities. As research standards move in the direction of collecting sex and gender data separately, making this part of your process now will ready you for coming changes.

Other sources:

https://williamsinstitute.law.ucla.edu/wp-content/uploads/June-22-Gender-identity-presentation.pdf

http://www.lgbthealtheducation.org/wp-content/uploads/Collecting-SOGI-Data-in-EHRs-COM2111.pdf

https://lgbt.umd.edu/good-practices-demographic-data-collection

https://orwh.od.nih.gov/sites/orwh/files/docs/NOT-OD-15-102_Guidance.pdf

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