The All of Us Research Program aims to build a large and diverse biomedical dataset, so we collect participant provided information (PPI) through surveys (such as to race, ethnicity, and gender information) to better include, welcome, and affirm the health and experiences of people from populations historically underrepresented in biomedical research (UBR). Because All of Us collects these data, the assessment of “common” demographics may be different in All of Us than in other studies. For this reason, it is critical that all researchers, even researchers who do not have a special interest in UBR populations, understand All of Us demographic data to ensure appropriate analyses; failure to understand how this demographic data is collected and what constructs are being measured may affect analyses and may result in misclassification and erroneous interpretations.
The All of Us Research Program collects gender identity, sex assigned at birth, and sexual orientation from all participants. This will help improve understanding of the health, well-being, and health disparities of UBR communities including sexual and gender minority (SGM) people. Because researchers may not have experience with these data, this resource was created to ensure that researchers understand each datatype to effectively use them in their research project. For information on the surveys used to collect these data, see Survey data information and resources and Survey codebooks. Also, see Sex, gender, and sexual orientation generalizations to see how these data are generalized within the All of Us dataset.
Gender Identity
Gender refers to the socially constructed roles, behaviors, activities, and attributes that society has defined. Gender can change over time. The terms “woman” and “man” are commonly used when discussing gender. However, there are more than two genders. Other genders include “agender,” “bigender,” and “polygender” among others.
Within gender, there are two primary constructs: gender identity and gender expression. Gender identity describes one’s internal sense of gender, such as “woman” or “man.” Some people identify outside of the typical binary of “woman” or “man” and use terms such as “gender non-binary” and “genderqueer.” Some people may not identify with a gender at all. Someone’s gender identity cannot be known without asking them. Gender expression is the way in which a person expresses their gender identity; this includes their clothing, hairstyle, cosmetic use, jewelry, and mannerisms/behaviors.
The All of Us Research Program assesses gender identity in “The Basics” survey (PPI). Gender expression is not assessed.
Gender identity is assessed with the following question:
What terms best express how you describe your current gender identity? (Check all that apply)
- Man
- Woman
- Non-binary*
- Transgender*
- None of these describe me, and I’d like to consider additional options*
- Prefer not to answer
[The following question is shown if any answer choices marked by * are selected]
Are any of these a closer description to your gender identity? (Check all that apply)
- Transman/Transgender Man/FTM
- Transwoman/Transgender Woman/MTF
- Genderqueer
- Genderfluid
- Gender variant
- Two-Spirit
- Questioning or unsure of your gender identity
- None of these describe me, and I want to specify (optional free-text field)
Sex Assigned at Birth
Sex refers to biological, anatomical, and physiological characteristics that primarily describe the phenotype of a species. This is typically determined by health care providers at birth who look at a person’s reproductive organs and genitalia. The terms “female” and “male” are commonly used when discussing sex. Occasionally, genetic or hormonal assessments may influence the sex assigned to a particular person. Additionally, intersex people are those with a difference of sex development – i.e., they may not fit traditional conceptions of “female” or “male”. This may include differences in chromosomes, genitalia, and/or internal organs.
Sex assigned at birth is assessed in “The Basics” survey (PPI).
Sex assigned at birth with the following question:
What was your biological sex assigned at birth? (Select one.)
- Female
- Male
- Intersex
- None of these describe me (optional free-text field)
Sexual Orientation
Sexual orientation is composed of three different constructs: identity, attraction, and behavior. Identity refers to the sexuality with which someone identifies. Attraction refers to the gender(s) to which someone is romantically, sexually, or emotionally attracted. Behavior refers to the gender(s) with which someone has sex. All constructs of sexual orientation can change over time. Additionally, all constructs may not necessarily be aligned. For example, a man may identify as straight (heterosexual), be attracted to people of any gender, and have sex with other men only.
The All of Us Research Program assesses the identity construct of sexual orientation in “The Basics” survey (PPI). Sexual attraction and sexual behavior are not assessed.
Sexual orientation is assessed with the following question:
Which of the following best represents how you think of yourself? (Check all that apply.)
- Gay
- Lesbian
- Straight; that is, not gay or lesbian, etc.
- Bisexual
- None of these describe me, and I’d like to see additional options*
- Prefer not to answer
[The following question is shown if the answer choice marked by * is selected]
Are any of these a closer description of how you think of yourself? (Check all that apply.)
- Queer
- Polysexual, omnisexual, sapiosexual, or pansexual
- Asexual
- Two-spirit
- Have not figured out or are in the process of figuring out your sexuality
- Mostly straight, but sometimes attracted to people of your own sex
- Do not use labels to identify yourself
- Don’t know the answer
- No, I mean something else (optional free-text field)
Please review our All of Us Research Program Stigmatizing Research Policy for further information.
Comments
0 comments
Article is closed for comments.