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The Belmont Report serves as our main philosophical and ethical guide in conducting research that involves human subjects. The three main pillars or the “basic ethical principles” of the Belmont report are:
These ethical principles are reflected in policy as they relate to human subject recruitment, consent, and treatment methodology. It should be easy to see that these principles are extended to the language that we use when engaging research participants. It is critical that our language is inclusive and sensitive to the needs and wants of diverse populations. This is especially important given that certain groups have been historically marginalized or harmed by condescending language. Researchers also need to consider that the benefits of research are distributed among individuals of different races, gender identities, ages, sexual orientations, socioeconomic status, abilities, and other personal factors. Historically there has been a lack of diversity in research subjects.
The purpose of this guide is to help researchers consider what is the most appropriate language to use that is respective and inclusive. These considerations are as fluid as our modern culture is now. This is our best attempt to give some guidance. These guidelines are to help us be intentionally respectful and to avoid any unintentional harm or offense to individuals. We recommend you embrace this respectful and inclusive language. As CUHSR reviews human subject research we reserve the right to require justification to use certain language and/or ask that you modify language use to meet these guidelines.
An area that tends to be troublesome for inclusive and respectful language is the collection of demographic information. The general consideration for collecting any personal information is that it must relate to your research purpose. For example, if race is not an important variable in your study, you should consider not asking for that information. But, we also acknowledge that certain information is collected to assure a diverse group of participants or may be a requirement for a publication. In these cases, you should consider dissociating this information from the individual data collected. Researchers then have to balance two concerns in research, the need for confidentiality and the need for diversity. In the broadest sense, you should always ask yourself how important any demographic information is to your study. If it is not, you should consider eliminating it. On the other hand, you should consider the need for a diverse pool of participants in your study. This can and will differ in every study. In your application, you should make a brief statement of justification regarding the demographics that you include.
To follow the ethical guideline of autonomy, most lists of demographic information should include:
__ Not Listed: ___________
__ Prefer not to say
NOTE: Using “__Other '' is not acceptable as this has a connotation that they are other than normal.
The remainder of the guide will cover specific areas of inclusive and respectful language usage. We encourage you to review the guidelines for inclusive language on our campus produced by the Office of Inclusive Excellence and the Office of Marketing and Communications. This document will go into greater detail and depth (currently being developed).
There are a host of terms that are outdated and have been used in pejorative ways. Such terms are “handicapped”, “wheelchair bound”, “the mentally disturbed.” These terms should be replaced with person-first language. Examples would be: instead of saying “disabled persons,” use, “individuals who use wheelchairs”, or “individuals diagnosed with mental illness”. When speaking of people who have specific medical conditions, person-first language should also be used. For example, use “individuals with Parkinson’s disease” instead of “Parkinson’s patients” or “people suffering from Parkinson’s.” When you can, be descriptive with the use of adjectives that state objective facts rather than using labels. For example, instead of stating “stroke victims with walking problems” state, “individuals who walk less than 0.4 m/sec secondary to hemiplegia.” This language is more descriptive and avoids calling people victims and qualifying their ability to walk as a problem. Another example would be instead of referring to someone as “low functioning,” state, “an individual in need of support with______.”
Some communities of persons with disabilities prefer to be identified by their disability. For example, some individuals prefer to be referred to as “Blind” rather than “individuals with visual impairments.” Some individuals prefer “Deaf” as to “hearing impaired” because they identify strongly with the deaf community. It is incumbent upon the researcher to understand these kinds of language idiosyncrasies before engaging individuals as research participants.
When referring to age avoid using terms that may reinforce stereotypes. For example, you should avoid terms like seniors, the elderly, or the aged. Better terms would be older persons, older adults, or individuals over the age of 65. When constructing surveys consider using groups of ages that make sense for your research. Rarely would it be necessary to ask for a specific birthday. Even asking for a specific age may run the risk of re-identification.
Terms describing physical characteristics could inadvertently be condescending. Obesity is a term that is used in medicine and used in our general culture that could carry negative stereotypes. Instead of stating “obese persons” consider using terms that describe the objective facts about the individual such as “individuals with a BMI between 30 and 35.” Instead of saying “a group of anorexics” consider stating “a group of individuals 20% below their ideal weight for good health”.
Unfortunately in the past, the terms sex, gender, and sexual orientation have been confused and used interchangeably. Each of these terms has a specific meaning and will have a specific use in different types of research. As with all the questions in this area, securing confidentiality or anonymity is essential. Accidental breaches of confidentiality or re-identification could have unintended consequences and harm to research subjects.
Sex generally refers to the biological sex assigned at birth. Asking about one’s sex could be necessary for biomedical research in which there could be a difference in physiology or biomechanics between males and females that may have a significant impact on research outcomes. Because asking about one's sex is akin to asking about medical information, it should be used only when necessary.
Typically the following would be acceptable:
Indicate your sex assigned at birth:
____Female
____Male
____Intersex
____Not Listed: ___________
____Prefer not to say
Because there is some ambiguity in some cases when considering biological sex, it is best not to ask for one's biological sex. Depending on your research area, there may be some specific language that is used in your field. For example, inclusive language used by pelvic health practitioners is: “individuals with vulvas” and “individuals with penises.” In some practices, the term “individuals who are pregnant” is used instead of “pregnant women.”
Gender is a social construct of specific roles and identities of individuals. In culture today these identities extend beyond the traditional designation of woman and man. When asking for gender, the best practice would be to ask: “Please state your preferred gender/gender identity”.
The following would be the least you should ask to be minimally inclusive:
____ Woman
____ Man
____ Nonbinary person
____ Transgender person
____ Not Listed: ___________
____ Prefer not to say
There are other designations such as gender fluid, gender questioning, and genderqueer. Depending on the nature of your research you could include several more appropriate adjectives to select for one's gender identity.
Sexual orientation could be an important variable in one's research. Again if you are asking about sexual orientation, it should be justified in your application. Terms to use related to sexual orientation remain ambiguous. However, we recommend the following acceptable terms as minimally inclusive: would be acceptable to be minimally inclusive.
Please state the sexual orientation that best describes you:
____Bisexual
____Gay/Lesbian
____Straight
____Asexual
____Pansexual
____Not Listed: ___________
____Prefer not to say
Generally, use gender-neutral language such as Chairperson instead of Chairman. Use neutral pronouns such as they, theirs, them, rather than he/she, him/her, his/hers.
Categorizing individuals by race, ethnicity, religion, or nationality can be complicated. One category or even several categories will never capture the breadth and depth of the complexity of individuals' backgrounds, beliefs, and behaviors. However, research using precise categories can help us gain insight into groups of people. This may be especially important to understand if certain groups are marginalized or treated differently revealing disparities among groups. Thus, researchers should be as accurate and descriptive as possible when categorizing groups.
Race and ethnicity have distinct meanings, but they are often combined into one question or concept since both are social constructs without a basis in biology. Race refers to similar physical characteristics deemed important to society. Ethnicity refers to shared cultural features such as language and ancestry. Religion is a cultural group of beliefs and practices that typically, but not always, involve worship of a deity and/or acknowledge a spiritual dimension. Nationality or Country of Origin simply refers to the geographical place of upbringing and/or national allegiance.
Though there can be considerable overlap between these concepts, the researcher should be clear as to which category they are gathering data. While race is a social-cultural construct, an individual ancestry could be important in some biomedical research as individuals within an ancestral line may have certain genetic risk factors and predispositions for diseases or illnesses. Biomedical researchers may consider asking: “Which term best describes your ancestral lineage going back two generations,” using terminologies, such as Asian descent, European descent, or African descent, to ensure they are considering possible traits of participants’ ancestral lineage.
The researcher should also consider if the racial/ethnic data they are collecting is being compared with racial/ethnic groupings from the government. In this case, they should reference the governmental standard. Most inclusive survey research will allow for mixed racial designation. The National Institute of Health (NIH) combines race and ethnicity into the following categories:
Please note, in the above list the categories are alphabetically. This is an acceptable way to list these groups to avoid any unintentional bias. A researcher should consider the following statement, “Select the racial/ethnic group you identify with the most (listed in alphabetical order)”.
Ethnic groups can be broad and varied. Researchers need to explore and be familiar with the ethnic groups with whom they work and the most appropriate language to use regarding the same. Hispanic and Latino are common ethnic groupings in the Western Hemisphere. Latina and Latinx are similar designations but with some controversy. The designation “European American'' is more frequently being used with “White” as some individuals do not want to be associated with the cultural negative connotation of the term “White.”
When asking about race, consider using a phrase such as:
“Which racial/ethnic group(s) do you identify with the most? (Choose all that apply.)”
Within your list of options, also include:
____Not Listed: ___________
____Prefer not to say
This language allows for self-determination rather than being forced into a category. Another less descriptive category that is acceptable to use is BIPOC [Black and Indigenous People of Color].
For an in-depth explanation of this topic, we recommend you read the following: Updated Guidance on the Reporting of Race and Ethnicity in Medical and Science Journals written in the Journal of the American Medical Association. For a more nuanced treatment of the language for race and ethnicity, see the Bradley University Guide on Inclusive Language. As well, review guidelines that are most acceptable to your professional organization and professional journals.
Religious affiliation may be an important variable in social behavioral research as religious beliefs can shape an individual's worldview. Research protocols need to be careful to include appropriate religious designations with appropriate terminology, being aware the major religions have different subcategories that reflect various beliefs.
To be inclusive we recommend designation of the following:
____No religious affiliation
____Atheist/Agnostic
____Not Listed: ___________
____Prefer not to say
In some cases, a breach of confidentiality can be critical where an acknowledgment of a religious affiliation could lead to persecution.
Nationality can also be a variable to help researchers understand a people group. Considerations need to be made for different variations regarding nationality. The following are examples: Current nation of residence, country of origin or upbringing, Parents' Country of Origin, and Languages spoken in the home as a child. As well, “immigrants” or “undocumented immigrants” are the preferred language over “aliens”.
A negative connotation is associated with people when using inappropriate language describing socioeconomic status such, as “the poor”, “the homeless,” or “inner city.” Instead, use person-first language, such as: a person experiencing homelessness, or a family receiving temporary assistance. Researchers could also use actual income levels rather than using terms, such as: “low income”, “low socioeconomic status,” or “middle class.”