How Canada’s racial data gaps can be hazardous to your health
2019-02-07 from theglobeandmail.com
If Olga Lambert lived in the United States, she’d be recognized as having a higher risk of developing aggressive breast cancer, which she’s endured three times since 2008.
Ms. Lambert is black, and American research shows that black women are more likely to develop the disease earlier than white women and more likely to die from it, a discrepancy that’s also evident in research out of Britain. Research has also found that West African ancestry is a risk factor. Ms. Lambert’s grandparents were born in Togo, Ghana and Benin.
These facts are partly why the American College of Radiology urges black women in the United States to have their breast-cancer risk assessed by the age of 30. That’s a full 15 years earlier than Ms. Lambert, who lives in Ajax, Ont., began having mammograms. A paucity of data by ethnicity means Canadian guidelines don’t consider that black women such as her have a potentially elevated risk.
Detailed data on race and ethnicity is taken into account by the U.S. Preventive Services Task Force when it makes national health-care recommendations. In its current guidelines on breast cancer, the panel of physicians and epidemiologists has included a full section discussing African-American women’s poor outcomes from existing treatment strategies.
Little of this potentially life-saving information is available in Canada, which leads to a dearth of knowledge about who is most at risk. From health care to education to the justice system and the work force, Canada has long been reluctant to collect or publish data based on race and ethnicity.
Black women with breast cancer are just one of the groups affected. An absence of data on race means we also lack clear insight into which groups struggle (or succeed) in the labour market, which children are suspended from school or placed in child welfare. These indicators can illuminate health disparities and how to target prevention and awareness efforts; they can provide understanding into whether programs are working, who is most in need of support and whether racial discrimination is at play.
These aren’t the only data gaps in Canada. A months-long investigation by The Globe and Mail found that the country lacks public data about dozens of important questions, from how children with disabilities are faring to the number of homeless people who die on our streets. Those gaps keep citizens in the dark about their health and environment, stifle innovation and prevent governments from understanding the impact of their policies.
Read more here.