Institutional Review Board (IRB)
Guidance: Collecting Demographic Information from Human Subjects
DATE
AUTHOR
PAGE
16-Mar-2022
E. Karahuta
1 of 4
Background:
The way demographic questions are posed can stigmatize social groups, erase social groups’
identities, and reinforce a social groups’ privilege. The experience of completing demographic
surveys should not cause research participants of any social group to feel marginalized. This
guidance provides suggestions for asking demographic questions in a manner that is respectful of
research participants’ many identities.
Who should read this Guidance:
1. All faculty, staff, and students conducting research with human subjects
2. The IRB committee member and chairs
3. Research Integrity Staff
Principles:
Lehigh University’s IRB makes the following recommendations for collecting demographic data
from research participants:
1. Limit demographic questions to those relevant to the research. Before any demographic
questions are included in the study materials, first consider why it is important to collect these
data. If certain demographic information is not essential to the research question, do not ask
participants to provide this information. Researchers should always consider the risk of re-
identifying a participant on the basis of specific demographic data (Fernandez et al., 2016).
For example, if students from a specific major are recruited to complete a survey, it may be
easy to re-identify some students based upon the intersection of their multiple identities.
2. Use respectful, non-stigmatizing language. Consult with experts in the field or with
members of the community to ensure that the terms being used are as respectful as possible.
3. Offer respondents the option to skip a question. For some participants, there may be risk
in describing some of their identities. Participants should be given the option to skip
demographic questions, if they wish. In an online survey, this can be accomplished by
making a response non-mandatory. Another option is to offer a “prefer not to respond” option
for all questions. This allows participants control over their disclosure of information and
allows participants to take part in a study without disclosing personal information unwillingly.
4. Do not use “other” as a possible response. Listing “other” as option communicates to
those who do not identify with a listed option that their identity is outside of the norm. This
stigmatizes participants whose identities are not listed (Lussenhop, 2018). Instead, attempt to
list inclusive options, rather than list only the most privileged or common identities, and also
offer a “prefer to self-identify” option.
5. Be comprehensive. When presenting demographic questions to participants that are
multiple choice, offer the option to select all that apply. In some cases, it might be feasible to
use open-ended questions (Fernandez et al., 2016). This option is inclusive and flexible in
that it allows participants to self-identify. However, it may require that researchers spend
more time coding these responses, and it may result in fewer answers that can be used in
data analysis (Lussenhop, 2018).
Examples:
The following are examples of ways to ask about social identities. This list is not exhaustive, and
each example has limitations. Researchers must carefully consider the complexities of the social
identities participants will be asked to disclose, and carefully consider the cultural context in which
the research is being conducted. These considerations will impact how the following questions
should be framed. (For more information see Hughes et al., 2016).
1. Sexual Orientation:
Example A: What is your sexual orientation? Please leave blank if you prefer not to
say: _______________________________
Institutional Review Board (IRB)
Guidance: Collecting Demographic Information from Human Subjects
DATE
AUTHOR
PAGE
16-Mar-2022
E. Karahuta
2 of 4
Example B: What is your sexual orientation? Check all that apply:
Asexual
Bisexual
Gay
Lesbian
Pansexual
Queer
Questioning
Straight
Prefer to self-describe: _________________
Prefer not to say
2. Gender Identity:
Example A: What is your gender identity? Please leave blank if you prefer not to
say:____________________
Example B: How do you identify your gender? Check all that apply:
Man
Woman
Non-Binary
Genderfluid
Genderqueer
Prefer to self-describe
Prefer not to say
(Include only if relevant to the research question):
Do you identify as transgender?
Yes
No
Prefer not to say
Example C: What pronouns should be used to refer to you? Check all that apply:
She/her/hers
He/him/his
They/them/theirs
Ze/zir/zirs or Ze/hir/hirs
No pronouns—use my name
Prefer to self-describe: __________________
Prefer not to say
3. Race/Ethnicity
Example A: Describe your racial and ethnic identity (or leave blank if you prefer not
to say): ___________________________
Example B: What is your families’ ethnic background and/or country of origin (e.g.,
Haitian/Haiti; Brazilian/Brazil; French/France; Indonesian/Indonesia, etc.)? Leave
blank if you prefer not to say: ___________________________
Institutional Review Board (IRB)
Guidance: Collecting Demographic Information from Human Subjects
DATE
AUTHOR
PAGE
16-Mar-2022
E. Karahuta
3 of 4
Example C: Some Americans are often stereotyped as foreign (Zou & Cheryan,
2017). To avoid conveying this assumption, researchers who are recruiting
participants from the United States may wish to incorporate participants’
American identity into questions about racial and ethnic identities:
With which racial and ethnic groups do you identify? Please select all that apply:
American Indian or Alaskan Native
Asian / Asian American
Black or African American
Hispanic or Latinx / Hispanic American
Middle Eastern or North African / Middle Eastern American
Native Hawaiian or Pacific Islander / Pacific Islander American
White / European American
Prefer to self-describe: _____________________
Prefer not to say
Example D: With which racial and ethnic groups do you identify? Please select all
that apply:
American Indian or Alaskan Native
Asian
Black or African American
Hispanic or Latinx
Middle Eastern or North African
Native Hawaiian or Pacific Islander
White
Prefer to self-describe: _____________________
Prefer not to say
4. Disability/Ability Status
Example A: Do you identify as someone with a disability or an impairment?
Yes
No
I prefer not to answer
If yes, what terms best describe the disability you experience? (If you prefer not
to answer, please leave blank):__________________
Example B: Do you identify as someone with a disability or an impairment?
Yes
No
I prefer not to answer
If yes, which of the following have been diagnosed? Please select all that apply.
A sensory disability
A physical disability
Institutional Review Board (IRB)
Guidance: Collecting Demographic Information from Human Subjects
DATE
AUTHOR
PAGE
16-Mar-2022
E. Karahuta
4 of 4
An intellectual disability
A learning disability
A psychological or psychiatric disorder
A chronic medical illness
A temporary disability due to illness or injury
A disability or impairment not listed above: __________________
I prefer not to answer
References:
1. Adapted with permission from the Salem State University IRB (Mirick, 2019):
https://elearning.salemstate.edu/courses/1110675/pages/guidance-on-inclusion-and-diversity
2. Fernandez, T., Godwin, A., Doyle, J., Verdin, D., Boone, H., Kirn, A., Benson, L., & Potvin, G.
(2016). More comprehensive and inclusive approaches to demographic data collection.
Presented at the American Society for Engineering Education Annual Conferen
3. Hughes, J. L., Camden, A. A., & Yangchen, T. (2016). Rethinking and updating demographic
questions: Guidance to improve descriptions of research samples. Psi Chi Journal of
Psychological Research, 21(3), 138-151.
4. Lussenhop, A. (2018). Beyond the male/female binary: Gender equity and inclusion in
evaluation surveys. Journal of Museum Education, 43(3), 194-207.
5. Zou, L. X., & Cheryan, S. (2017). Two axes of subordination: A new model of racial position.
Journal of personality and social psychology, 112(5), 696-717.
