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A biased test kept Black people from getting a kidney transplant

apnews.com

27 points by khasan222 2 years ago · 51 comments

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Chris2048 2 years ago

There seems to be something missing here:

> Race isn’t a biological factor like age, sex or weight — it’s a social construct.

> In 1999, an equation used to calculate eGFR was modified to adjust Black people’s results compared to everyone else’s, based on some studies with small numbers of Black patients and a long-ago false theory about differences in creatinine levels.

> Black Americans are over three times more likely than white people to experience kidney failure.

so, is some racial metric reasonable or not? why are black Americans more likely to experience kidney failure - social issue, or biological?

was the study with a small number of participants repeated with a larger number?!

  • ahazred8ta 2 years ago

    Kidney failure is caused/aggravated by diabetes, hypertension/high blood pressure, and stress. All of these have a major environmental / social factor.

  • locopati 2 years ago

    maybe there are other systemic issues that result in underdiagnosis or poor quality care

branon 2 years ago

> Race isn’t a biological factor like age, sex or weight — it’s a social construct.

Interesting conjecture there AP, but I don't buy it. Surely race is a biological factor. Maybe not for kidney health specifically but wouldn't race be inextricably tied to a person's biology, heritage, medical history?

Race is determined at birth by parents' biology, therefore is biological. Not _everything_ that makes people different from one another is a purely social construct.

Don't black people get sickle cell at higher rates than other races? Race is important in a lot of medical contexts.

Great that they fixed the kidney thing but don't throw the baby out with the bathwater, or the next headline will be "excess deaths due to incorrect treatment of <condition> for <race>".

By all means if the race-based heuristics are unsound, throw them out, but the article makes mention of a bunch more that are under scrutiny. Are they really all inaccurate or are we discounting biology in favor of social justice?

  • BugsJustFindMe 2 years ago

    > Don't black people get sickle cell at higher rates than other races?

    Except that "black people" describes the color of someone's skin, and sickle cell prevalence is more properly tied to things that are much more specific than skin color, like the geographic origins of sickle cell disease. Which is why black people in Ethiopia and South Africa have low prevalence, and white people on mediterranean towns like Orchomenos have high prevalence. It's your social construct that lumps the idea of "black people" into a racial category in the first place and then associates that with sickle cell disease.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708126/

    https://web.archive.org/web/20140917070248/https://www.thegu...

    • Ancapistani 2 years ago

      Playing Devil's Advocate here - how about recommended levels of vitamin D? That's directly influenced by pigmentation.

      Or melanoma? According to this, "white, non-hispanic" people develop melanoma at a rate of 26.1 per 100k while "black, non-hispanic" people develop it at a rate of 0.8 per 100k.

      It seems apparent to me that there are at least _some_ cases where the social construct of "race" is useful in a clinical setting.

      • BugsJustFindMe 2 years ago

        > how about recommended levels of vitamin D? That's directly influenced by pigmentation.

        People generally don't consider dark skinned Indians and dark skinned Nigerians and dark skinned Peruvians to be the same race because they all have dark skin. They're just as different from each other as they are from me despite having more melanin.

        > It seems apparent to me that there are at least _some_ cases where the social construct of "race" is useful in a clinical setting.

        The concept of skin pigmentation is useful for things related to skin pigmentation. The concept of "race" is still artifice and absolutely the least useful proxy there is for whatever you're actually trying to measure in any given moment.

        > Playing Devil's Advocate here

        Please don't. https://bofh.org.uk/2018/10/25/devils-advocacy-without-tears...

    • branon 2 years ago

      I appreciate this, thanks. Sure, sickle cell was a really quick example and definitely highlights my presuppositions here. It was the best one I could come up with off the top of my head.

      But it seems we agree that my highly generalized social construct wouldn't invalidate the biological factors at play that expose more specific racial groups to higher/lower risk of certain conditions.

      My fear is that we have to make certain we are only removing the social constructs and not the biological ones when we purge racial considerations from medicine. Quality of patient care will inevitably suffer otherwise.

      • BugsJustFindMe 2 years ago

        > But it seems we agree that my highly generalized social construct wouldn't invalidate the biological factors at play

        There are always biological factors at play, but this premise of "race" as applied by anyone ever is always basically mythological and not related to biological differences in a meaningful way that isn't (at the risk of sounding dismissive, for which I apologize up front) racist. Sickle cell is actually the perfect example of this. The people of Namibia and Angola look the same to me. They're even from neighboring countries. And yet their cultures are very different certainly, their languages are different, one has high sickle cell prevalence and the other does not... So are black people from Namibia and Angola the same race if they don't have that genetic variation in common? What about other genetic things they don't share? What about the genetic things they share with white Americans? Are a black person from Tamil Nadu, a black person from Ethiopia, a black person from Mali, and a black person from Papua New Guinea the same "race"? They don't look the same to me aside from having dark skin. Are my black neighbors the same race? They also don't look the same aside from having dark skin. Probably none of them are carriers of sickle cell trait. Is there something identifiable they all share that they don't also often share with white populations?

      • zardo 2 years ago

        There is more genetic diversity within the "black" race than outside it. Skin color and hair type are I'm sure useful categories for dermatology, but probably not much else

        • Gibbon1 2 years ago

          Well black people in the US generally are a mix of central African + European + other. So like any group like that can have genetic factors that predispose them to certain diseases. Besides kidney disease problem people have much higher rates of sarcoidosis. It is what it is.

          In this case sounds like dummkopfs decided to adjust the test to normalize black peoples rates of kidney disease to those of white people.

          I'll be over here banging my head against my desk.

  • advisedwang 2 years ago

    You can group populations in a huge number of ways. By culture, genomes, by skin tone, by language, by size, by hair color, by attempts at testing intelligence whatever. Many of these are hereditary to various degrees, and many of these correlate to various diseases and social outcomes. That's not in serious dispute.

    But race is just one specific grouping. There's nothing magic about it. It's not even consistent over space or time what the categories are or who gets categorized into which. When people say race is constructed, one thing they are saying is that our culture has produced this one grouping dominates our thinking of the variability between humans. And that critically we have embedded that into our society in a way that creates outcomes based on race.

    When it comes to disease, "black" in particular is a TERRIBLE category, because there are a huge number of population groups that all get labelled black, even though they have different genetics, different issues, different ethnic behaviors. It's maybe hard to to better in the US given that the slave trade erased people's knowledge of where they came from and accelerated mixing. But also nobody is really trying to do better because racial categorization and anti-blackness is so embedded in American thinking. Compare this situation to where "white" Americans often know (or at least have some way to try to know some fraction) of their European ancestry.

  • NovemberWhiskey 2 years ago

    >Don't black people get sickle cell at higher rates than other races? Race is important in a lot of medical contexts.

    Yes; e.g. melanoma is 30x more prevalent in non-Hispanic white people than in black people.

    • hagbard_c 2 years ago

      And 'in reverse' in the higher northern and southern hemispheres vitamin-D deficiency and the ailments that come with that are more prevalent among those with darker skin than among those with lighter skin tones.

  • bryanlarsen 2 years ago

    If race is biological, then "black" isn't one. There is approximately the same amount of genetic diversity within the "black" race as there is within the entire human population.

    If you define "race" to mean a population with a similar genetic diversity as Caucasians, then there are 4 to 5 black races within Africa alone.

  • helixten 2 years ago

    Sickle cell disease is caused by a mutation in the HBB gene, not by belonging to a specific race. Race is a social construct, meaning it's defined by social factors rather than strictly biological ones. Since someone who is Black in the US often has about 20% European ancestry, how does this compare to someone who is directly from an African country? Where is the line?

    • trhway 2 years ago

      >Race is a social construct, meaning it's defined by social factors rather than strictly biological ones.

      that sounds like if a child grows in different social environment it may have different skin color, eye shape and other attributes ascribed to the race. Btw, in USSR in 194x-195x similar theory was a prevalent biological theory (professor Lysenko) greatly supported by the Communist Party against the "bourgeois theory of genetics", and the people who dared to challenge that theory were ostracized, fired, sent to GULAG.

      • whelp_24 2 years ago

        You are just putting to much wieght on skin color. You can't tell someone's race by looking at them. Australia aboriginal people are not really related* the Africans for example.

        *Beyond the degree that everyone is related.

      • ok_dad 2 years ago

        It’s more like “people with similar genetics tend to grow up in the same locations for many generations” and out of that comes skin coloration, genetically linked diseases, etc. Race is still a social construct based on factors our imperfect brains have associated with the different races we’ve made up for ourselves.

  • Tade0 2 years ago

    > Race is determined at birth by parents' biology, therefore is biological.

    I need to ask: what is race, specifically?

    Living beings don't inherit traits in a consistent manner, otherwise all siblings would have been identical.

    Most likely there are people who have parents of different skin tones who inherited the darker of the two but not the vulnerability to sickle cell anemia.

    • branon 2 years ago

      In my amateur worldview your "race" is the manner in which you inherit genetic traits from your parents. Skin color is perhaps the most unimportant of these traits.

      Actually looking this up, seems the notion of race as social vs biological is hotly contested. This is new to me! Fair to say it's a social construct with a biological cause and potential biological implications, then?

      I'm all for knocking down biases, just don't want to throw out good data in the process. What's the margin of error on dark skinned people with sickle cell?

      Or perhaps more relevant - black people's kidneys were thought to be _healthier_ when it turns out they're 3x more likely to have kidney disease. At first glance this sounds like a very large error but I'm interested in how much of that is biological vs societal risk. Is it really as big of an error as it sounds? What if they start out with healthier kidneys, the +3x comes from somewhere else, and we're correcting far too late in the game when we jostle the transplant line?

    • scotty79 2 years ago

      > I need to ask: what is race, specifically?

      Clusters on the biological spectrum of the human species formed on the basis of easily recognizable superficial phenotypical traits?

  • whelp_24 2 years ago

    Race is a political construct that varies in definition by country, culture, and year. (See how race is defined in places like Mexico and Brazil vs the US for example). People of the same race can much more variation in genetics that people of the same area. Where you live is actually a much better predictor of your genes (yeah it's correlated but obviously it's not the same thing)

    Race is roughly correlated with ancestry especially in places where mating between races was discouraged. So often race is a close enough measure of family history, but make no mistake, there is no pure members of a race.

    If there is a biological race like construct it doesn't match with whatever races your country's census records.

  • xsdu 2 years ago

    Race has to be a biological factor. Some of my family were on the transplant list for a long time, due to PKD. Throughout those many years there was a constant call for more Black donors.

    • NovemberWhiskey 2 years ago

      There's two sides to that - autosomal dominant polycystic kidney disease is more common in black people, and black people are also significantly less likely to be organ donors.

  • user- 2 years ago

    The boundaries of race are a social construct , if the rewording helps you understand the meaning behind what a race is.

    • atlantic 2 years ago

      The existence of edge cases does not invalidate a concept.

      • kaibee 2 years ago

        Actually, it kind of does. If you have to keep adding edge cases, that tends to imply that your foundation is bad.

        • atlantic 2 years ago

          Let me give you an example. Here's a concept: countries. You've got the US and Mexico, and there is a border between them. You could probably find an infinite number of points right on the border, that can't be said with certainty to belong to either country. And based on those outliers, you could argue that the whole concept of country is invalid, and that countries and borders should be abolished. You see where I'm going with this?

          • whelp_24 2 years ago

            This is an ironic example. Countries are a social/political construct. Whether a country even exists (Taiwan, micronations, various other countries) depends on who you ask, as does the boundaries of the border. Countries do not exist in any physical sense. Indeed countries and race are very tied to each other and exist about equally. Even if you pretend that culture is a physical thing, you'll find that cultures don't align with the borders of Nation-states properly either.

            Society exists, and it has (often serious) repercussions but it isn't an inherent physical property of geography or genetics.

            • atlantic 2 years ago

              I think you're missing the point. The question isn't whether concepts refer to existing things or not, but whether they are valid and useful.

              Nothing general ever exists - only the particular. The number two doesn't exist, although you can find twos in nature. Basic Aristotle. Similarly, race doesn't exist, but you can find instances of races in nature.

              That's why arguing that a concept is invalid because it is "only" a social construct is disingenuous. Concepts are always constructs; they are never "natural" in themselves. What determines their validity is their usefulness, which is related to how closely they mirror the structure of human experience.

        • atlantic 2 years ago

          Or that you're in bad faith.

  • bugglebeetle 2 years ago

    Human genetic diversity doesn’t map on to American conceptions of race. Africa has among the highest levels of genetic and phenotypic variation of any region, for example. If anything, the reverse is true: clinging to 19th century pseudoscience and its bogus racial categories is an impediment to scientific understanding of biological reality.

    • NovemberWhiskey 2 years ago

      Nonetheless, if a condition is much more prevalent within a particular population (whether due to genotype or phenotype) then membership of that population is diagnostically relevant, regardless of the absolute level of genetic diversity with the population.

      Black people are much more likely to have sickle cell disease. White people are much more likely to have melanoma. Ashkenazi Jews (and the Cajun) are much more likely to have Tay-Sachs.

      • advisedwang 2 years ago

        Imagine you come across a society that categorizes people by their finger length ratios. They say if you have a longer 2nd digit your race is 2D, longer 4th digit your race is 4D.

        Newspaper descriptions of people frequently say if they are 2D or 4D, especially if crime is involved. Job applications ask if you are 2D or 4D. There have to be laws banning 2D and 4D discrimination because it's so common.

        You tell them it's crazy that they spend so much time worrying about 2D vs 4D. That it hardly matters! In return they tell you of course digit-race exists! You can easily measure it, and it's partly heritable. In fact it's scientifically unsound to ignore digit-race because it correlates with so many health issues [1].

        Your cries that those health issues would be better understood with other ways of thinking about populations are ignored.

        [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5296424/

      • bugglebeetle 2 years ago

        It’s only diagnostically relevant in the context of imprecise population categories, lack of knowledge about disease origins, and the absence of genetic testing for conditions (i.e not in 2024). As others have pointed out in this thread, for example, the conflation of Black with prone to sickle cell disease is erroneous and more correctly determined by ancestry proximate to the region of the disease’s origin. Similarly, “white” in the US includes a wide swathe of genetics with various degrees of predisposition to melanoma (e.g. Northern vs Southern European).

        • NovemberWhiskey 2 years ago

          It's not diagnostically determinative, but it's diagnostically relevant. Not all black people have sickle cell disease, nor do all people of sub-Saharan African descent, nor do all people who have one parent known to a carrier of variant HBB genes etc. We're just talking about the degree of statistical likelihood that something from a patient history points to a diagnosis.

        • Chris2048 2 years ago

          > more correctly determined by ancestry proximate to the region of the disease’s origin

          Is the better metric just as easy to determine though? In other words, it may be a mere proxy to a "better" metric, but that means it's still correlative, and we can only abandon it if we have no better proxy.

blueflow 2 years ago

> Race isn’t a biological factor like age, sex or weight — it’s a social construct. So how did it make its way into calculations of kidney function?

How would cystic fibrosis pick its targets based on a social construct? Look up its very imbalanced prevalence.

So, if the prevalence of cystic fibrosis is indeed race-based, then we can't just assume that kidney function isn't.

  • Ekaros 2 years ago

    To me it seems reasonable that many diseases are more or less common based on race. But our concept and specially NA concept is not nearly fine-grained enough for it to work in many cases. Looking at Europe it seems there are differences even inside countries and groups that now are considered single ethnicity. So what would be needed is to track back to that level of history of population.

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