Canada, Genetics, Health, Top Stories

To Be Useful, Health Data Must Go Deeper Than ‘Black’ and ‘White’

All over the world, the COVID-19 pandemic has disproportionately affected patients based on a variety of identifiable factors, from age to sex to occupation. Data such as these are crucial to public-health officials and researchers tasked with improving care for all citizens. But in some cases, the quest for data seems driven as much by political factors as by the need to protect public health.

In Canada, where I work as a resident physician in the field of head and neck surgery, the federal government has proposed that racial data be tracked as part of our national response to the COVID-19 pandemic, as is already the case in the United States. On the surface, there would seem to be an obvious parallel with the need to collect race-based policing data, especially in the wake of George Floyd’s death and the worldwide protests that followed.

Collecting such data makes sense in the context of policing, since race corresponds to a visible marker that can prompt radically different responses from police officers. But the situation is different when it comes to public health. And using race as a proxy for socioeconomic and environmental explanations of disease—by broadly categorizing patients as White, Black, Asian, Indigenous, and so on, according to melanin-influenced phenotype—is a dangerous leap. Obtaining more detailed data, including nationality-based information, would be a more fruitful endeavor.

Consider the use of broad racial typologies in the field of education. York University professors Carl James and Tana Turner combed through Toronto District School Board data to go beyond the officially recognized categories of “Black” and “White.” In so doing, they discovered that recent immigrants from Africa and the Caribbean tend to perform better than those with generational ties to Canada. This disparity is not evident within the aggregated statistics, wherein both of these groups are simply classified as Black. In a country with a rich recent history of immigration, such as Canada, finer distinctions are particularly important.

Similar examples arise when it comes to race-based health data. Sickle cell anemia, a blood disease with a challenging clinical trajectory, is most commonly found in sub-Saharan Africa, whose population undeniably may be placed within the “Black” designation. But examining sub-populations within this category yields surprising trends. Sickle cell anemia is about 100 times more common in Nigeria than in Somalia. Making matters more confusing, the prevalence of the disease is higher in Greece, whose majority population we may safely place in the “White” category, than in either Somalia or Jamaica. Terms such as “Black” and “White” simply become useless when talking about many areas of health-related statistics.

In some rare instances, there may be a direct causal association between skin melanin content and disease. Skin cancers fall into this category. Here, we may confidently assert that racial characteristics are relevant to the biological explanation for the disease. Medicine has long recognized this, and has adapted to it—including through the so-called Fitzpatrick scale as a tool to help evaluate risk based on skin tone.

In the case of COVID-19, we know that diabetes, hypertension, and obesity all are significant comorbidities. Does skin melanin content have an effect on incidence rates and mortality? We can’t confidently come to a conclusion one way or another. But any clinician will tell you that such a link is improbable. Yes, there are outcome disparities that align with race. But such disparities among racialized Canadian communities seem largely related to unequal access to care, and to socioeconomic factors related to a historical narrative of inequality. Those inequalities should be addressed regardless of whether they manifest themselves in COVID-19 data.

Broad categorizations fall apart when it comes to Indigenous groups as well. It is no secret that Indigenous Canadians face unacceptable health disparities when compared to non-Indigenous Canadians. By many accounts, the state of Indigenous health in Canada is a shameful stain on an otherwise successful universal healthcare enterprise. But just as with Somali-Canadians and Greek-Canadians, each Indigenous community faces unique challenges related to their disease burden. While arthritis and rheumatism are more common amongst Indigenous groups as a whole, the prevalence of these conditions is significantly higher for First Nations as compared to Inuit communities in the northern part of the country. Surely this is important when determining priorities in a cash-strapped healthcare delivery environment.

Similarly, a sub-group analysis reveals that northern Inuit communities in Nunavut and the Northwest Territories face significantly greater challenges related to access to care as compared to First Nations people in the provinces, who are more likely to live closer to large hospitals and specialist medical clinics. These disparities are a matter of geography, amongst other things. Yet important patterns are masked if the data is simply grouped under broad categories such as “Indigenous” and “Non-Indigenous.”

These examples underscore the need for granularity in data collection. More detailed information encompassing nationality and background, in combination with other important socio-economic factors, allow for a more complete picture of the health problems that must be addressed. There are numerous health-outcome disparities between “Black” and “White” Canadians that many politicians and policy makers, with good intentions, seek to cast as evidence of systemic racism. Putting aside how that term should be defined, such an approach would apply a misguided oversimplification to the practice of medical data collection.

The goal should be to help all Canadians—especially those who truly need it. Statements such as “Canadian females of Filipino descent have higher incidence rates of thyroid cancer when compared to the general population” are much more useful than “Asian-Canadian females have higher rates of thyroid cancer.” That is why Public Health Ontario and organizations such as the ICES research institute already use large data sets to fine-tune clinical practices and improve the livelihood of all citizens.

Thanks to advances in machine learning, we have the tools to collect, store, and analyze data on an even larger scale. But our efforts will be successful only if we apply a typology that is based on categories useful to doctors and patients, not politicians and activists.

 

Amr F. Hamour, MD, MBT is a resident physician in Otolaryngology—Head and Neck Surgery at the University of Toronto.

Featured image: Researcher at the National Heart, Lung, and Blood Institute engaged in the study of sickle cell anemia, 1987.

Comments

  1. " … most likely due in part to the country’s history of systemic racism. It has left Black people with a high rate of chronic diseases such as diabetes …"

    That’s a keeper.

  2. I understand that the subject of race is very fashionable right now, but somehow the enthusiasm with which politicians, scientists and journalists in Canada and elsewhere are throwing themselves into the race issue reminds me of the first half of the 20th century.

    At that time it was well known and scientifically substantiated that a person’s race is the most important factor in determining their physical needs (like appropriate medical treatments), their mental needs (current example: recent studies suggest that pupils learn better if their teacher has the same ethnic background), and even their political needs (and who knows this better than Joe Biden in relation to black voters?).

    This was followed from the 1960s onwards by a dark age in which people clung to the mistaken belief that race was an outdated concept, that our similarities were more important than our differences, and that the future would be color-blind.

    Somehow it looks like we’ve come full circle. Haven’t we been down this road before? Did the future ever look more promising? (sigh)

  3. Race has no place in science and medicine. Sure, ethnicity has a place in both, as different ethnicities may have unique strengths and weaknesses, but race conflates diverse people (Greeks and Russians as “White”; and Indians and Chinese as “Asian”; Nigerians and Chicago blacks as “Black”).

  4. There are 4-5 races, depending on who one asks. Not very accurate since each encompasses such a wide range, as you point out.

    Ethnicity is more far more accurate and in many ways useful. But then again with over 5000 ethnicities, it too can be ‘inaccurate’.

    I wish there was a better system. Something based on DNA types. Something very accurate that divided humans into maybe 20 or so main groups, and 20-50 odd ball clusters. Call them ‘landraces’ or ‘cultivars’ or ‘types’ or something.

    The article i linked above about Neanderthal DNA really got me thinking. Why arent we testing for a host of DNA issues based on being one ‘type’

    If people had a ‘type’, they could then be aware of DNA issues known for their ‘type’. Researchers could know what to focus on, doctors would know what best to prescribe, etc.

    CRISPR technology promises all kinds of medical advances. Ancestry.com probably has your relatives DNA already. Cant we use all this to better order a means of describing who we are?

    I want my DNA type just as readily identifiable as my blood type. And for the same reasons.

  5. Please measure vitamin D - serum 25OHD - at admission and obtain, if possible, information on to what extent the person has been taking vitamin D supplements. (Most take D3, but some take D2, which is not as effective.)

    This is important clinically and epidemiologically. COVID-19 severe symptoms result from the body’s initially weak and then overly-aggressive, pro-inflammatory, self-destructive immune response. There is a vast amount of research on the importance of vitamin D to correct immune functioning. Vitamin D deficiency is common and it is the biggest single easily correctable cause of immune weakness and dysregulation.

    A fundamental and difficult to fix cause of overly-inflammatory immune response is that our ancestors all had intestinal worms - helminths - which downmodulated some of their immune responses. So we evolved an overly aggressive immune response, which is no longer downmodulated since most people today do not have helminths. Of course there is considerable genetic variation in the strength of these on-average overly aggressive responses, even if a person was replete in all nutrients which affect immunity, including vitamin D, boron, omega 3 fatty acids etc.

    This pandemic of vitamin D deficiency (compounding the absence of helminthic downregulation) drives numerous chronic conditions, including neurodegeneration, MS, cancer etc. It also drives severe symptoms with COVID-19. (It may somewhat increase the chance of contracting COVID-19, but no amount of vitamin D will protect people from getting it.)

    For more information, please see my site http://aminotheory.com/cv19/ which links to numerous research articles. Here is a chart showing 25OHD levels by season, for people in the UK: https://www.medrxiv.org/content/10.1101 /2020.06.21.20136903v2 .

    (I previously referred to research from the Philippines and Indonesia regarding low vitamin D and COVID-19 severity. While the data reported in these articles is probably somewhat realistic, I now believe both those articles are fake: https://researchveracity.info .)

    The best research I know of regarding low 25OHD levels correlating with vitamin D deficiency is this preliminary report of almost entirely Caucasian hospital patients in Newcastle upon Tyne, in the far north of England: https://www.medrxiv.org/content/10.1101/2020.06.21.20136903v2 ICU patients had, on average, lower 25OHD levels than those in the general wards, despite being significantly younger.

    Since 2008, 48 MDs and researchers have been advocating that 40 to 60ng/ml (100 to 150nmol/L) be the target 25OHD vitamin D blood level. https://www.grassrootshealth.net/project/our-scientists/ The UK government recommends 10ng/ml (25nmol/L) or above.

    https://sci-hub.tw/10.1007/s40519-016-0312-6 40ng/ml or more needed for the immune system. https://sci-hub.tw/10.1002/mnfr.201000174 2011: 40 to 60ng/ml again. “A review of the critical role of vitamin D in the functioning of the immune system and the clinical implications of vitamin D deficiency”.

    https://pubmed.ncbi.nlm.nih.gov/22264449/ The average vitamin D level of traditionally living East African Maasai herders and Hadzabe hunter gatherers is 46ng/ml (115nmol/L).

    There is an urgent need for most people to take supplements at ten or more times the level of the lousy 400IU a day recommended by the UK government. This is especially the case for people with brown and dark-skin who do not get direct, high-elevation, sun exposure to a large part of their body most days. This includes many Africans in Africa: https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(19)30457-7/ This map shows 25OHD levels in nmol/L, which are 2.5 times the ng/ml figures. Everyone needs 100 to 150nmol/L 25OHD for good immune system health.

    In a medical sense, I think of “race” as referring to an approximate identification of a person’s genetic makeup, due to the inheritance of various patterns which evolved as humans spread across the Earth and encountered different conditions, with differing random mutations to form the basis of newly evolved genes and their resultant traits. I have not heard of there being five races, or any small, fixed, number. Many people have multiple significantly different patterns of genes from different branches of the instructive, but necessarily simplified, tree structured representation of human evolution. So it would be impossible to devise a comprehensive set of names for particular “races” which is applicable to all people.

    There are on-average differences in biology between races, by this definition, which are clinically and epidemiologically important. So they should be recorded and used as part of trying to understand why some people have better or worse health than others in ways which correlate with the genes they inherit. Of course there are confounding factors, such as differences in lifestyles as chosen by the individuals and/or due to the way other people treat them according to their perceived racial characteristics.

    The article on the neandertal gene haplotype (a set of genes with particular specific details normally inherited together) is https://www.biorxiv.org/content/10.1101/2020.07.03.186296v1 . According to this, people whose genetic inheritance is from Bangladeshis have the highest prevalence of this haplotype, which according to https://www.nejm.org/doi/full/10.1056/NEJMoa2020283 (so I read, I haven’t had time to read these articles properly yet) is associated with, and so is a cause of, more severe COVID-19 symptoms.

  6. I agree with the crux of this article that more granularity and more data is always a good thing. But the left-signalling newspeak like “racialized” also makes me want to make clear that none of that means race doesn’t exist or is “socially constructed” in some way. Humans all belong to one species, which thanks to geographic isolation and the resulting divergent evolution, consist of a handful of races (Caucasian, Negroid, Mongoloid), which themselves each consist of a multitude of ethnicities. There are further sub-populations within ethnicities, and you can discern ever-smaller, evermore-homogeneous groups until you get to the family and then to the individual. Claiming as the author seems to that race isn’t useful because there are such things as ethnicities ignores that every subdivision (species, race, ethnicity, population, ect) is true at its proper scale. They are not in conflict with each other.

    I think the same is true in physics. Newton’s laws are true at the scales humans experience, while General Relativity is true at larger scales and quantum mechanics at smaller scales. The appearance of conflict is an illusion: they are all true at their proper scales.

    As science progresses we can add more nuance and detail to our models. Race differences in medicine were an easy metric to measure, but we can be more specific by looking at ethnicities or even smaller populations. Ultimately, we will look at an individual’s DNA to identify the ailments they are likely to experience.

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