At issue is a once widely used test that overestimated how well Black people’s kidneys were functioning, making them look healthier than they really were — all because of an automated formula that calculated results for Black and non-Black patients differently. That race-based equation could delay diagnosis of organ failure and evaluation for a transplant, exacerbating other disparities that already make Black patients more at risk of needing a new kidney but less likely to get one.

A few years ago, the National Kidney Foundation and American Society of Nephrology prodded laboratories to switch to race-free equations in calculating kidney function. Then the U.S. organ transplant network ordered hospitals to use only race-neutral test results in adding new patients to the kidney waiting list.

Dr. Martha Pavlakis (of Boston’s Beth Israel Deaconess Medical Center and former chair of the network’s kidney committee) calls what happened next an attempt at restorative justice: The transplant network gave hospitals a year to uncover which Black kidney candidates could have qualified for a new kidney sooner if not for the race-based test — and adjust their waiting time to make up for it. That lookback continues for each newly listed Black patient to see if they, too, should have been referred sooner.

    • I_Has_A_Hat@lemmy.world
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      The problem is there are significant genetic differences between races that can’t just be painted over and must be taken into account when providing medical care. Redheaded people, for example, need 20% more anesthesia than others. If you don’t take that into account, they could wake up screaming on the operating table.

      • stoneparchment@possumpat.io
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        I’m copying my comment from elsewhere as a jumping off point:

        Hi hello I am an expert in this

        We do have these studies. We have tons of them. At the research level, the essentialist bias of healthcare is well-documented.

        Basically, not only do we know that there are very, very few (really, none, when you come right down to it) areas where we can accurately predict a person’s underlying physiology based on their apparent race-- we also know that it is underlying bias (and not biological evidence) that makes some healthcare workers and researchers think otherwise.

        In fact, these essentialist biases are documented along other dimensions of identity than race, also. These biases are found whenever healthcare workers treat individuals with different sexes, sexual orientations, gender identities, abilities, and body sizes, too (not an exhaustive list).

        You probably aren’t doing it intentionally, but this idea that “we just need more studies” is a common refrain of resistance to change from people who have a vested interest in the biased status quo-- calling for further study is seen as uncontroversial, even if there’s a mountain of evidence already (see: climate denial).

        Moreover, it actually misses the point of how epistemologies of biology are constructed. In reality, there are many things we know on the research level that are not efficiently disseminated to the relevant expert populations. The truth is that we don’t really need more studies-- we need to figure out how to get the current best information into the hands of doctors, nurses, and clinical researchers.

        To address your comment about red heads, I’d like to point out that it isn’t the red-headed-ness of a person that creates the effect you’re describing, it is the presence of specific alleles for the creation of pigments that both provide tint to our hair and skin and are also involved in pain/drug metabolic pathways.

        Sure, that means that red-heads almost always have the effect you describe, but people with semi-functional or single recessive copies of alleles of the same genes may not have red hair but might have the same pain-pathway dysfunction. These mutations can pop up in individuals of any ethnic background, meaning that it is impossible to rule out the presence of the pain dysfunction based on race, skin, or hair color.

        Moreover, in red-heads, individuals may possess mutations in other gene pathways (or epigenetic variation in gene expression regulation) that partially or fully eleviate the effect of the pigment allele mutation. In simple terms, all red heads might have the pain mutation associated with red hair, but some of those individuals might have a separate mutation (that doesn’t change their appearance) that decreases their pain or anesthesia threshold, making the net effect zero. This again means that we can’t be certain of someone’s underlying physiology based on their appearance or race.

        source: senior graduate student in epigenetics, gene expression, and with a specific research foci in essentialist beliefs among experts in the biological sciences

    • crimsonpoodle@pawb.social
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      8 months ago

      (I should preface this with the fact that I only really skimmed the aamc article you linked)

      I think we have a serious bias problem in medicine. However, the right answer might be to fund studies that debunk the racist claims pervading the education system, rather than relying solely on stricter policies.

      It seems to me that we want individualized medicine. Discounting race, different people may respond differently to various treatments; for example, I have really long tooth roots. Therefore, we should develop tests to identify these differences and tailor treatment accordingly. I understand the fear of research that could possibly establish differences in treatment across racial lines due to historical context. However, I would tentatively suggest that if one truly believes race is an ineffective descriptor for such distinctions, then one should expect that studies would more likely aid than hinder the effort to address racial disparities in medical treatment and outcomes.

      • stoneparchment@possumpat.io
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        8 months ago

        Hi hello I am an expert in this

        We do have these studies. We have tons of them. At the research level, the essentialist bias of healthcare is well-documented.

        Basically, not only do we know that there are very, very few (really, none, when you come right down to it) areas where we can accurately predict a person’s underlying physiology based on their apparent race-- we also know that it is underlying bias (and not biological evidence) that makes some healthcare workers and researchers think otherwise.

        In fact, these essentialist biases are documented along other dimensions of identity than race, also. These biases are found whenever healthcare workers treat individuals with different sexes, sexual orientations, gender identities, abilities, and body sizes, too (not an exhaustive list).

        You probably aren’t doing it intentionally, but this idea that “we just need more studies” is a common refrain of resistance to change from people who have a vested interest in the biased status quo-- calling for further study is seen as uncontroversial, even if there’s a mountain of evidence already (see: climate denial).

        Moreover, it actually misses the point of how epistemologies of biology are constructed. In reality, there are many things we know on the research level that are not efficiently disseminated to the relevant expert populations. The truth is that we don’t really need more studies-- we need to figure out how to get the current best information into the hands of doctors, nurses, and clinical researchers.

        • crimsonpoodle@pawb.social
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          Thank you for the information! It was not my intent to echo any such refrain. If you don’t mind, would you point me to some good survey papers which might expand my understanding of the topic? (physiology and human phenotypes?) May not be the right terminology for apparent race but I’ll lean on your expertise to interpret my meaning.

          • stoneparchment@possumpat.io
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            I will do my best! :)

            There are a couple different concepts at-play here, and finding a single resource that summarizes everything I mentioned would be quite difficult. Moreover, given the information dissemination problem I mentioned, you’d be hard-pressed to find a non-academic description of this stuff (I.e. written for a non-biological or social researcher audience)…

            But, I don’t think that should prevent anyone interested in trying to learn more!

            Here’s some papers that discuss some of the issues at play here:

            Is the cell really a machine?, discusses some of the issues with relying too much on genetics/molecule scale biology knowledge for determining the emergent nature of traits/phenotypes (with specific respect to the machine model of the cell… This paper is heavy on molecular biology)

            Conceptualizations of Race: Essentialism and Constructivism, a sociological overview informed by clinical and biological research discussing constructivist vs essentialist conceptions of race (heavy on sociology)

            Addressing Racism in Human Genetics and Genomics Education , reviews several papers specifically addressing the information dissemination problem I mentioned, going back to the “source”, which is education. This paper focuses on studies in undergraduate biology education but others are looking at education in at the k-12 level, also.

            If you wanted to do a database search yourself, some keywords I’d use would be: race essentialism, genetic essentialism, (really just “essentialism” would get you somewhere), race in biology education, race in medicine

  • Diplomjodler@feddit.de
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    8 months ago

    How the fuck does a “race” based test get approved in an environment where scientific principles are relevant?

    • phdepressed@sh.itjust.works
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      Because this test has been around for literal decades. People don’t like finding out what they learned as fact is wrong and admin doesn’t want to spend the money changing. Racism and sexism are alive and well in hospitals. Clinically a new clinical test has to be found, go through a rigorous validation before it will be accepted (even new machines may take months to year+ to be validated). Then the test has to be scaled to where the pricing isn’t that different or better than the original.The fight to change this has taken a lot more effort and been going on longer than the article thinks.

    • Melkath@kbin.social
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      Because there are a slew of biological factors (such as predisposition to sickle cell anemia) that are more prevalent in black people than white people.

      Don’t factor race into medical evaluation, that’s racist and you are killing black people. Factor race into medical evaluation, that’s racist and you are killing black people.

      It’s a no win.

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        Things like, say, an increased need for vitamin D supplements in colder climates, because you need sunlight to manufacture vitamin D to make serotonin and the increased melanin blocks what little sun is available way up north? Sure. That one is a difference off the top of my head that people really just don’t think about.

        Kidney function is provably not one of them and never was, so you’re gonna have to fuck off with that. I usually make a conscious, concerted effort to be a better person than I was on reddit, but you already admitted in another comment that you don’t know shit about medicine and you seem bothered in the opposite direction regardless.

        So with the possibility of this topic being your emotional support knowledge base out of the picture, the only horse you logically seem to have in this is that seeing ethnic minorities demand that we stop allowing them to die by reason of nothing annoys you to have to listen to.

        If that’s not the case, I might be a bit quieter and rephrase everything you said forever, because it does not look like you want it to look. If it IS the case, get the fuck off my platform.

        • fishos@lemmy.world
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          Sickle cell anemia would like a word. Some diseases are absolutely more prevalent in certain races. The problem is we as a society fail to distinguish between “being racist” and “acknowledging differences”. You point out differences and suddenly you’re racist, even if it is relevant. In this case, it seems not to be relevant and is good it is being removed. But let’s not pretend there aren’t factual reasons for it to exist in some crcumstances.

          Another example is pulse oxygen monitors being worse on melonated skin. It’s a result of the physical properties of the skin. Is it racist to acknowledge this and have different method for people with different skin types? Absolutely not.

          Not everything is an identity issue. And it’s not “your platform” you egotistical prick. Fuck off yourself.

          • girlfreddy@lemmy.caOP
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            Another example is pulse oxygen monitors being worse on melonated skin. It’s a result of the physical properties of the skin.

            Bullshit. The problem is the creators of devices only tested them on white people so didn’t adjust for differing refractive properties in coloured skin. Same goes with motion-detecting faucets.

            Stop blaming the victim ffs.

        • Melkath@kbin.social
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          Continue to try to be a better person than you were on reddit.

          I admitted I’m not a doctor and commented on the rhetoric. You came in acting like master of all racial doctoring, and with the same confrontational virtue signaling aggression I pointed out.

          I highly doubt that any doctor is trying to kill black patients because they are racist.

          Instead of “we detected a bad test and are trying to fix it, yay!” It’s “yall racist fucks be killing us because you’re racist. Why did you bring race into my Healthcare anyway?”

          Answer to that question “because you just said ‘you racist fucks won’t consider my race and you treat us like white people, and that is killing us’.”

          It’s never a productive conversation.

          It’s always “yall racist. I’m a victim of your racism. I’m a victim of you. Stand up, no, sit down, why yall standing? Look at you standing, so racist. If you werent racist youd sit down. Look at the racist just sittin’ there. Stop victimizing me. Get on your belly. Why your racist ass on your belly? Oppressing me with your lying on your belly ass.”

      • Scroll Responsibly@lemmy.sdf.org
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        Don’t factor race into medical evaluation, that’s racist and you are killing black people. Factor race into medical evaluation, that’s racist and you are killing black people.

        It’s a no win.

        It’s not a game, it’s peoples’ lives. Treat patients as they are, factor in race when it’s relevant, and no reasonable person will think that you’re racist.

        It’s only racist when one factors in race when it’s not relevant, thus harming patients.

        • Melkath@kbin.social
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          It’s called practicing medicine for a reason, and perhaps advancement isn’t being made faster because no matter what the doctor practicing the medicine does, they are called a racist who is intentionally trying to kill them, so the doctors steer clear of the topics, and outdated measurements stay in use for decades.

          Honestly, it reeks of excuses for malpractice lawsuits.

  • TrickDacy@lemmy.world
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    The people who think racism doesn’t exist unless it’s overt and intentional will not care, unfortunately

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    The eGFR is just an estimated calculation not a real lab test. At best it is a nice screening tool. Any physician basing care solely off of this value is being negligent. I am sure there are many reasons behind such negligence including institutional racism baked into the American healthcare system. It makes me extremely happy to know that governing bodies are finally making changes for this particular bit of lab testing.

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    This is awesome. We need to have a mainstream understanding that algorithms are defined by people.

  • Melkath@kbin.social
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    Okay, I don’t in any way know the biological science involved, but I do know a few years back, I was reading all over the place how American medicine was aimed at white people, and not factoring for different biological factors for black people was racist and was killing black people.

    Now I am reading an article that testing factoring for the biological differences of black people is racist and was killing black people.

    It’s just seems like a no-win situation…