Race is a way of grouping people based on biological traits like skin colour, hair texture, language, or where they are from. It is a social construct, meaning these groups were created by humans. Examples of race categories are: Asian, Black, Middle Eastern, White, among others. While race is sometimes used as a proxy (or a stand-in) for ethnicity or genetic ancestry, these terms differ in definition. Ethnicity generally refers to social and cultural categories, whereas genetic ancestry refers to genetic origins.
Why is race collected?
Race is collected because studies have shown that the baseline (or starting) concentration of the serum markers used in MMS differ between races. Therefore, the screening algorithm makes adjustments based on the pregnant individual’s race, with the goal to make screening more accurate for everyone.
It is important to remember that race itself, as a social construct, is not responsible for the observed differences in serum marker concentrations. As we learn more about what truly causes the differences (e.g. social and structural factors, the impact of structural racism, and the biology behind the markers, including genetic ancestry), and, as we learn more about the experience of reporting one’s race, the approach may evolve. For now, race is being collected and used as a proxy for these unknown root causes.
How should race be collected?
Ideally, the pregnant individual self-reports their race on the requisition by checking all categories that apply or writing another race. Health-care providers should not choose a race for them. Refer to the table below for definitions of each race category.
Is sharing race mandatory?
Pregnant individuals can decline to report their race information and screening can still be done; however, the accuracy of the screening may be affected. Without race information, the calculated risk may over- or underestimate the true chance for the baby to have Down syndrome or trisomy 18.
Where is race data stored?
Race data is used in the screening software and included in the report for the ordering health-care provider. This information is also shared with BORN Ontario and is protected by law.
What if the race information needs to be corrected or if an individual wants it removed?
If the race on the screening report is not accurate, the health-care provider can contact the screening laboratory for further information. Sometimes, certain races are grouped into an overall category to be used in the screening algorithm, which means a person’s exact race might not be on the report but rather, a broader category. It is recognized that broad race categories are not ideal and do not reflect the diversity of individuals, yet this is a limitation of the screening software currently.
Other times, the wrong race may in fact have been reported on the requisition. In this case, the laboratory can usually correct this information and issue a new report.
If a pregnant individual would like their race removed entirely from the screening report, the laboratory would categorize the individual in the “other” grouping. This might affect the accuracy of the screening result.
Table 1. Current racial groups that are collected for MMS. *PSO, in collaboration with the MMS laboratories, is exploring the ability to expand the racial categories collected
|
Race Category |
Description/examples |
|
Black |
African, Afro-Caribbean, African-Canadian descent, etc. |
|
Asian |
Central Asian (Kazakhstan, Turkmenistan, Uzbekistan, Kyrgyzstan and Tajikistan and other Central Asian descent)
East Asian (Chinese, Korean, Japanese, and other East Asian descent),
South Asian (Afghanistan, East Indian, Pakistani, Bangladeshi, Sri Lankan, Indo-Caribbean, etc.)
Southeast Asian (Filipino, Vietnamese, Cambodian, Thai, Indonesian, other Southeast Asian descent) |
|
Indigenous: |
First Nations, Métis, Inuit descent |
|
White |
European descent
Middle Eastern (Arab, Persian, West Asian descent, e.g. Afghan, Egyptian, Iranian, Lebanese, Turkish, Kurdish, etc.) |
|
Other |
Another race category (write in response) |
