Chosen Name

The chosen name is the name a person uses and wants others to use in personal communication, even if it is different from the name on that person’s identifying documents (e.g., birth certificate, driver’s license, insurance, etc.). The term “chosen name” can be used alongside “name” (if different) on forms and other legal documents.

Gender

Gender is a multidimensional construct that has psychological, social and behavioral dimensions that include gender identity and gender expression. The IRB recognizes that gender is not fixed. It is fluid, dynamic, situational and may change over time or day to day.

Gender Identity

Gender identity refers to a person’s internal sense of gender (e.g., being genderqueer, being a man or being a woman) and potential affiliation with a gender community (e.g., genderqueer, trans women or women). Gender identity is internal; therefore, someone’s gender identity may not necessarily be visible to others.

Gender Expression

Gender expression is how a person displays their identity through appearance and/or behavior. Gender may be reported in terms of an individual’s felt, desired or intended identity and expression, as well as how an individual believes that they are perceived by others.

Sex

“Sex” refers to biological differences among female, intersex and male people (i.e., hormones, secondary sex characteristics, reproductive anatomy). Sex can be altered over time through the use of hormones and surgical intervention.

Sex Assigned at Birth

Sex assigned at birth is the assignment of individuals at birth to a sex category by medical practitioners and is typically based on the appearance of external genitalia. Sex assigned at birth is then recorded on the birth certificate as female, intersex or male.

Sexual Orientation

Sexual orientation is an individual’s physical and/or emotional attraction to and desire to sexually or emotionally partner with specific genders and/or sexes (e.g., gay, lesbian, heterosexual, bisexual, pansexual, asexual). Sexual orientation should not be confused with gender identity. For example, an individual who identifies as transgender may also identify as straight, lesbian, gay, bisexual, etc.

The IRB supports a culture of inclusivity. Not being gender conscious is against the board’s mission of protecting human subjects in research. 

Sex, gender, sexual orientation, sexuality, etc. are only a few of the many specific terms with unique definitions. These terms may not be used interchangeably. Investigators are responsible for being precise in their language, in the questions they ask and the information they collect.

The Belmont Report reinforces this position in its guiding principles:

• Respect for Persons instructs that individuals be treated as autonomous agents. The IRB acknowledges an individual’s right to control their own personal information. Investigators should respect an individual’s autonomy in all areas, including their identity and how they self-identify.
• Beneficence respects an individual’s decisions, directs researchers to do no harm and protects an individual’s well-being. The IRB recognizes that a person may suffer emotional harm from feeling excluded or misgendered by recruitment material, a consent document, data collection procedures and other research materials that do not include options that correspond to their identity or forces them to identify in a way that is not consistent with their self-identity.
• Justice addresses the fairness and distribution of risk in research. The IRB feels strongly that by being sexual orientation and gender inclusive, investigators can ensure that the risks and benefits of research may be equitably distributed across all participant populations.

Data Collection

When appropriate, it is respectful to ask participants their chosen name, pronouns and how they would like to be identified.

• Consider the importance of the survey questions and how the information will be used. Is the information used to confirm eligibility, ensure diversity of the study’s sample, or necessary for the science being conducted? If the question is not needed for the science of the study, there may be better ways to ensure sample diversity than asking personal or potentially-invasive questions of prospective participants.
• Consider the appropriateness of the survey questions. If the research involves drug administration, sex assigned at birth may be more relevant to ask about than gender identity.
• Emphasize the voluntary nature of the process. Participants must never feel obligated to provide information about sex and gender, and must have the ability to easily skip a question or answer a question by choosing “Skip,” “No response” or “Prefer not to answer.” The IRB feels strongly that investigators must not include the term “Other” as an option for participants who wish to skip a question, as this term does not adequately reflect wanting to skip a question and may have negative connotations.

Privacy and Confidentiality

Consider the nature and location of data collection. An individual’s sex or gender identity can be sensitive, personal and not always something they share with others. It is important to protect this information, especially if research is potentially identifiable. If possible, allow participants to choose a location to safely conduct research activities where they feel comfortable sharing confidential information about themselves in private.

Study Documents

• Use nongendered word order that does not show preference for one gender over another. Organize variables alphabetically. 
• Use more common gender neutral terms instead of grouped gendered variables (e.g., “people” instead of “men and women,” “siblings” instead of “brothers and sisters”)
• Use nongendered terms that are equivalent to gendered nouns (e.g., “police officer” instead of “policeman,” “first-year student” instead of “freshman”).
• Use nongendered pronouns instead of pronouns with specific gender markers (e.g., use “they” instead of “he, he/she or she”) or write in second person instead of third person (e.g., “You will be paid $20 for completing the survey,” instead of “He/She will be paid $20 for completing the survey.”).

Certain questions, such as Sex and Gender/Gender Identity, may be required by federally funded research (i.e., the National Institutes of Health, U.S. Centers for Disease Control and Prevention, National Science Foundation, etc.). Please refer to your study sponsor’s specific research design and data reporting requirements to verify if these questions apply to your research.

The IRB used the following resources to develop its policy statement requiring the use of sexual orientation and gender inclusive language in all study materials.

• Brown University LGBTQ Center
• Key Terms (LGBTQ Center)
• Best Practices for Asking Questions (The Williams Institute)
• GLAAD Media Reference Guide
• Affirmative Services for Transgender and Gender-Diverse People (National LGBT Health Education Center)
• SAGE: Advocacy and Services for LGBT Elders