This article is written by Milda Aksamitauskas, Chief Data Officer, Wisconsin Department of Justice. This article was prepared by Milda Aksamitauskas in her personal capacity. Any opinions expressed in this article are the author’s own and do not reflect the view of Attorney General Joshua Kaul or the Wisconsin Department of Justice.

I became white when I moved to the United States in 1998. Until then, I had always simply thought of myself as Lithuanian, but in my new adopted country, I was asked time and again to provide my race in forms for everything from hairdresser appointments to college applications.

I was puzzled by these forms in my first years living here. By a factor of elimination, the best option to me seemed to select the “Other” category if that was available. There, I would write my nationality, which I considered to be my true identity.

This isn't just a question of identity (though it's most certainly also that). When we ask people to tell us their race, it opens the door to a deluge of hard ethical questions: How will governments use that data? And what if your identity doesn't appear on the form?

It is one thing when your friend or a colleague asks where you are from. It is a bit different when you mark that choice on a government form and don’t know how and where the data will be used. It usually is an optional field.

A tricky construct

Government entities at all levels collect race and ethnicity data. But there is no standard way to collect this information because it is a social construct.

In the US, typical options for race include White, Black, Native American/American Indian, Asian, Other and Hispanic usually as separate, distinct categories. Sometimes more options are provided, sometimes fewer, and ethnicity is sometimes lumped together with race.

The White category is generic. Stereotypically, we probably think about northern European light skin, blonde or brown hair, blue or green eyes. The US Census Bureau uses the 1997 Office of Management and Budget (OMB) definition, “a person having origins in any of the original peoples of Europe, the Middle East, or North Africa."

Black or African American is another option on forms. The Census Bureau’s definition is “a person having origins in any of the Black racial groups of Africa”. What about people who immigrate to the US now from countries such as Morocco, Senegal, Nigeria or South Africa? In some ways, their experiences might be similar to Black people in the US, but in other ways, their experiences might be wholly different. Despite this, these nuances are glossed over when they are asked to give their race on a government form.

Over time, I noticed Hispanic appearing as an ethnicity category on forms, although it is more of a linguistic grouping. Hispanic refers to people from the Latin American countries, most of whom speak Spanish, but which also includes Brazilians that predominantly speak Portuguese. People from Mexico, Chile, Paraguay and so on are mixed into one block. I always wondered if people from Spain and Portugal predominantly consider themselves white or Hispanic. The Census’ definition is “Hispanic origin can be viewed as the heritage, nationality, lineage, or country of birth of the person or the person’s parents or ancestors before arriving in the United States. People who identify as Hispanic, Latino, or Spanish may be any race.”

While race is a social construct, it is a social construct that has a profound influence on our lives.

American Indian or Native American category is for members of American Indian Tribes that lived on this land before Europeans arrived. According to the Census, American Indian or Alaska Native refers to a person having origins in any of the original peoples of North and South America (including Central America) and who maintains tribal affiliation or community attachment. There are several federal definitions for this category depending if children and grandchildren are considered American Indians.

Asian is another category for people from Asian countries. According to the Census, Asian is “a person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.”

In the last twenty years the language we have used to talk about race and ethnicity has evolved significantly. Since the year 2000, the Census has allowed people to tick the box of more than one race. During the same period, the term 'Caucasian' has fallen out of fashion. This term originated in the eighteenth century European developing sciences on racial classification, and was coined by the German anatomist Johann Blumenbach who declared Caucasians to be the ideal type of humans. Countries that border the Caucasian mountains include Armenia, Azerbaijan, Georgia, Iran, Russian and Turkey. Social scientists, such as Y. Moses, argue that the Caucasian term was later reinvented to focus on the whiteness of northern and western Europeans and to exclude Persian, Armenians, Arabs, North Africans and North Indians. Another example of changing language are more recent terms such as 'Latino' and 'Latinx' variations.

Your life, captured in a box

What exactly is the problem here? While race is a social construct, it is a social construct that has a profound influence on our lives.

One could consider the US Census Bureau as a gold standard for the US data collectors. If you need to calculate a rate or a percentage for a special population, you could map your counts to the total population as estimated by the Census and in the same categories. But this may not meet your needs.

The first document most people get is a birth certificate. When a new person enters this world, a plethora of information is recorded before the baby leaves the hospital. Typically, babies touch several administrative systems in their first 24 hours of life: hospital medical records, vital records registration system that issues birth certificates, state laboratories that test for rare genetic disorders using so called ‘blood cards’, hearing screenings, immunisation registries for the first Hepatitis B shot. Depending on the state and hospital there may be registries tracking birth outcomes, rare heart conditions or birth defects.

Since 1989, the vital records system has assigned race/ethnicity for the baby based on the mother’s race. The father is not always known or listed and more information about the mother’s health history and prenatal care is captured on the birth certificate worksheets. There is no scientific measurement to assign race to a baby when parents identify with different groups; it is a social construct distilled to a few check-off boxes on a form. Black and white infant mortality disparities are calculated from this information and are used for healthcare resource allocation and creation of programmes aimed to improve healthy birth outcomes.

At some point you start to fill out forms for yourself and can identify your race and ethnicity as you perceive it. In some situations, for instance if you are rushed to the emergency room or if you interact with police, others may assign this information for you. It may come from other sources, provided by those filling out the forms or stay blank.

Identity is more complex than a handful of neat categories is able to capture, but it shouldn’t become an existential question each time you fill out a form.

Some categorical eligibility for income-based programmes (for example, Medical Assistance under Federal Title IX) may have reduced cost-sharing for American Indians, that is when the exact definition of this category comes into play.

The last document that frames your life is the death certificate. By definition, somebody else fills out a form that turns into the death certificate that family members use to close telephone lines, bank accounts or split inheritance. Epidemiologists use mortality data to calculate mortality rates and burden of premature deaths for communities or rates of disproportion effects on a disease or condition.

Some people will be included or excluded, implicitly or explicitly face discrimination or privilege based on a social construct that they in some instances get assigned without any control.

Damned if you do

Race and ethnicity data collected today is a social construct based on history, time,  location and inertia. If it wasn’t collected, we couldn’t quantify impact on redlining, infant mortality disparities, health inequities, criminal justice system effects on Black communities or affirmative action plans in companies. In other words, while it might be tempting to scrap this field from forms entirely, that could also have unintended negative consequences.

Identity is more complex than a handful of neat categories is able to capture, but it shouldn’t become an existential question each time you fill out a form. A more reasonable solution is probably for everyone designing forms to clearly define where and how they plan to use the data. And we should be more thoughtful about asking this question in the first place.

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