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Things like gender and age and height and weight make perfect sense to me, but I don't really see why most doctors ask for your race. Is there a medical reason behind this or is it just for identification purposes?

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  • 1
    You may want to add a location tag: I presume United States, as 'race' is not asked in any other place on earth, and asking this would be a criminal offense in most developed nations, given the public nature of most healthcare. Ethnic background is asked in most places, if deemed relevant, for reasons explained in the excellent answer by Timur Shtatland.
    – user24241
    Nov 17 '21 at 6:56
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    @Servaes You're familiar with the questions asked by doctors in every place on earth?
    – Carey Gregory
    Nov 17 '21 at 15:06
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    @CareyGregory Nice try. I can also say with plenty of confidence that there is no place on earth where (proper) doctors routinely ask their patients about their zodiac sign. Both are unscientific notions that have nothing to do with medical science. After visiting quite a couple of countries across all continents, it's quite clear that the US is a rather bizarre outlier in this regard.
    – user24241
    Nov 17 '21 at 16:39
  • 2
    The time may come when the genome of any patient is easily accessible in the electronic medical record. In this case race and ethnicity might not be as relevant any more. But this possible future is not yet here. Which is why this question by the OP exists. :) Nov 17 '21 at 17:27
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    @Servaes No, it wasn't a nice try. I correctly identified your hyperbole. You're being pedantic about the race vs. ethnicity distinction. It's a variation in language usage and culture, not the barbaric superstition you're trying to paint it as. When a US doctor asks about race, they are in fact asking about ethnicity. Equating it with astrology is just pure hyperbole.
    – Carey Gregory
    Nov 17 '21 at 20:00
64

Race and ethnicity are risk factors in many diseases. Examples include, but are not limited to, cystic fibrosis and spinal muscular atrophy.

There is also an epidemiological purpose of collecting this information. It is important to know if some disease is affecting some races or some ethnicities disproportionately. This is how it was found out that race or ethnicity is a risk factor in certain diseases in the first place.

RFERENCES:

Sheets L, Johnson J, Todd T, Perkins T, Gu C, Rau M. Unsupported labeling of race as a risk factor for certain diseases in a widely used medical textbook. Acad Med. 2011 Oct;86(10):1300-3. doi: 10.1097/ACM.0b013e31822bbdb5. PMID: 21869670. : https://pubmed.ncbi.nlm.nih.gov/21869670/

McGarry ME, Williams WA 2nd, McColley SA. The demographics of adverse outcomes in cystic fibrosis. Pediatr Pulmonol. 2019;54 Suppl 3(Suppl 3):S74-S83. doi:10.1002/ppul.24434 : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6857719/

Hendrickson BC, Donohoe C, Akmaev VR, et al. Differences in SMN1 allele frequencies among ethnic groups within North America. J Med Genet. 2009;46(9):641-644. doi:10.1136/jmg.2009.066969: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729371/

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    Sickle Cell Anemia is one of the most oft cited examples of this phenomenon. Nov 15 '21 at 15:40
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    I joined this SE site just for up-voting the comment by @ThomasMarkov. I'm not black myself, but I have 7 family members with a black father or mother and 5 of them have sickle cell anemia. 4 are carriers (no symptoms) and 1 has the active form (needs heavy medication and isn't expected to live past 60-65). Ethnicity is definitely a factor for some hereditary diseases.
    – Tonny
    Nov 15 '21 at 23:42
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    Ethnicity is a risk factor in many diseases. Race is a biological concept that has nothing to do with (human) medicine.
    – user24241
    Nov 16 '21 at 17:47
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    @Servaes Do you have references supporting your comment? Nov 16 '21 at 17:56
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    @TimurShtatland You already give a reference for my first claim. The second claim is rather obvious, as there is only one human race, biologically speaking. I do not know any other meaning of the term 'race' when applied to humans, although I understand that in the US the term is applied to differentiate between humans in some vague manner. Either way the term has no place in human medicine. If I have misunderstood your use of the term 'race', I'd appreciate it if you could clarify what you mean by 'race' here, as I think the use is nonstandard.
    – user24241
    Nov 16 '21 at 18:01
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There's a myriad of adjustments that can improve patients' treatment if it's race-informed. As a very small but characteristic example, the 2021 European Society of Cardiology Guidelines for Heart Failure recommend considering hydralazine and isosorbide dinitrate only for patients self-identifying as Black.

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Reference: McDonagh TA et al. 2021 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. Eur Heart J. 2021 Sep 21;42(36):3599-3726. doi: 10.1093/eurheartj/ehab368

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  • Comments are not for extended discussion; this conversation has been moved to chat.
    – Carey Gregory
    Nov 16 '21 at 15:31
  • @J... If you want to discuss this further, please post your comments in the chat room I linked to above.
    – Carey Gregory
    Nov 17 '21 at 0:32
11

Here are some random examples:

Ashkenazi Jewish Genetic Diseases

Bloom syndrome.

Canavan disease.

Cystic fibrosis. Th

Familial dysautonomia (FD).

Fanconi anemia.

Gaucher disease.

Mucolipidosis IV.

Niemann-Pick disease (type A).

Tay-Sachs disease.

Torsion dystonia.

Sephardi and Mizrahi Jews diseases

Oculocutaneous albinism

Ataxia telangiectasia

Creutzfeldt–Jakob disease

Cerebrotendinous xanthomatosis

Cystinuria

Familial Mediterranean fever

Glycogen storage disease III

Limb girdle muscular dystrophy

Tay–Sachs

11-β-hydroxylase deficiency

Lactose Intolerance: Millions of Americans Don't Know They Have It

African American and Asian ethnicities see a 75% - 95% lactose intolerance rate, while northern Europeans have a lower rate at 18% - 26% lactose intolerance

High lactose tolerance in North Europeans

Lactose tolerance is exceptionally widespread in Northern European countries such as Sweden and Finland, with tolerance levels of 74% and 82%, respectively

4

On a scale from sledgehammer to scalpel, race, as recorded in medical data is closer to sledgehammer in terms of granularity, but hey, sometimes we need sledgehammers (e.g. for broad epidemiological surveys).

In terms of precision medicine, the promised dream is of identification of genetic idiosyncrasies guiding treatment - for which race is a very rough approximation.

A counterexample to the utility of race in medicine is the very recent overturning of the use of race in estimated glomerular filtration rate (eGFR) calculation. Recently (as in this year, 2021), the national kidney foundation formed a task force to reassess the inclusion of race in eGFR calculation and recommended NOT including race as a factor.

https://www.kidney.org/news/update-reassessing-inclusion-race-diagnosing-kidney-diseases

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  • I'm confused over their statements. It seems like kidney disease is more common in some races, but they want to stop acknowledging this as a fact? Nov 15 '21 at 23:56
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    @JonathanReez This is just a wild guess, but I imagine the idea here is that the factors that correlate race to kidney disease rates are going to be lifestyle characteristics commonly incident to cultural phenomena associated with a particular race or ethnicity, rather than an actual physiological predisposition, such that, when accounted for, produce no significant differences between races. That is, people of different races with similar lifestyle choices are at similar risk for kidney disease. Nov 16 '21 at 0:20
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    For that matter, there's the case of scientists trying to disprove racial-supremacists' bu**sh**. But to their horror finding African heritage children actually were less intelligent and they kept pulling that thread: lead poisioning's effect on development -> due to racial disparities, disproportionately in tenements -> poor tenement maintenance -> peeling paint -> toddlers eat paint peels -> cheap products used -> white lead is a cheaper pigment than titanium dioxide. That's not even a race thing; it's a class thing. But it was identified due to race. Nov 16 '21 at 21:17
  • @JonathanReez The issue is more that "race" (i.e., what color is your skin) does not determine your appropriate baseline eGFR level, but rather ethnicity and genetics. Race is an easily understood stand-in for ethnicity, but it's not really valid - especially now that it's no longer uncommon to have mixed race ancestry. Looking at someone and saying "you should be in this bucket because your skin is dark color or light color" is highly misleading, unless you're very specifically looking at melanin related elements.
    – Joe
    Nov 16 '21 at 22:12
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    @JonathanReez Well, it's more complicated than that. Sometimes it's okay to use race as a stand in for ethnicity, particularly when it leads to getting more care than you otherwise might have. The problem with the eGFR formula was it was used to justify giving Black people less care, even when there are better ways to determine their kidney function that doesn't utilize race.
    – Joe
    Nov 16 '21 at 22:18
3

The answer to your question can come from many angles. I do not have clinical experience, but I do have regulatory reporting experience.

In the United States, the CDC runs a program called "Vaccines for Children". I've had to run reports on demographics of patients many times, specifically for the following VFC criteria located at the link below.

https://www.cdc.gov/vaccines/programs/vfc/providers/questions/qa-flyer-hcp.html

VFC Eligibility

Patients are eligible until they turn 19, if they meet one or more of the following criteria:

  • Medicaid-eligible
  • Uninsured
  • American Indian or Alaska Native (AI/AN)
  • Underinsured (Underinsured children can only be vaccinated at a Federally Qualified Health Center (FQHC) or Rural Health Center (RHC)

The medical record system I use refers to this data as the patient "Ethnic Group".

Below is the relevant CMS regulation that states this information should be collected for those on Medicaid and CHIP. Many organizations will simply ask everyone during registration. If you're uncomfortable, you can simply decline to answer.

https://www.medicaid.gov/medicaid/quality-of-care/quality-improvement-initiatives/quality-of-care-health-disparities/index.html

*The Affordable Care Act of 2010 (Section 4302) requires the secretary of the Department of Health ad Human Services (HHS) to establish data collection standards for race, ethnicity, sex, primary language, and disability status, and calls for these categories to be consistently collected and reported in all national population health surveys that rely on self-report. Section 4302(b)(1) requires the collection of data on these five demographic characteristics in Medicaid and CHIP, and requires that the collection of these data in Medicaid and CHIP adhere to the data-collection standards developed in 4302(a). *

3

When you immigrate to the United States (as I did), one of the first things you notice is that you get asked about your race all the time. Want a loan from your bank, your race is recorded (if you decide not to disclose your race, the bank officer will take a best guess - really) https://www.fdic.gov/resources/bankers/fair-lending/. Apply to university, expect questions about race and ethnicity (https://stanfordmag.org/contents/race-and-admissions). And so on. Much like @Servaes pointed out in the comments, the US questions about race are (at least to me) rare outside of the US.

The US is burdened with the history of slavery, post-slavery Jim Crow policy and some level of post-Jim-Crow systemic racism. There are now many laws that address and try to correct these injustices. However, in order to do that, they need to measure what's going on. That's the source of many of these questions in the US.

And, of course, there are the specifics of race as a contributor to the likelihood of genetic conditions that the other answers address (personal example: after my wife's third miscarriage, my wife's Middle Eastern heritage and my French Canadian background suggested a Tay–Sachs test - https://www.ninds.nih.gov/Disorders/All-Disorders/Tay-Sachs-Disease-Information-Page).

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  • We work differently than most SE sites in that we have a strict policy that all answers should be backed up with reliable references so that the answer can be independently verified regardless of the reader's background. See this list of reliable sources. If you still have trouble with this, feel free to visit the help center or Medical Sciences Meta. Unreferenced claims can lead to answers being deleted.
    – Carey Gregory
    Nov 18 '21 at 15:08
  • 1
    Thanks. My experience is mostly on other sites. I added links to a page about fair lending laws, an overview of race-based university admissions policies, and an NIH page about Tay Sachs disease (the Definition popup includes this: "The incidence of Tay-Sachs has been particularly high among people of Eastern European and Askhenazi Jewish descent., as well as in certain French Canadians"). I figure readers are on their own for Slavery, Jim Crowe and Systemic Racism
    – Flydog57
    Nov 18 '21 at 15:49
  • Given that this question is not tagged with 'united-states' then only your third paragraph is relevant as an answer.
    – DrMcCleod
    Nov 23 '21 at 16:55
2

In addition to all the fine answers, there are even more clinical reasons for including race in your chart. For one, clinical lab norms and calculations based on the clinical lab values can differ by race. For example, the calculation for Glomerular Filtration Rate, an important indicator of renal function, uses a different formula for African American patients inside the US (https://www.kidney.org/atoz/content/race-and-egfr-what-controversy). Note that this is not without controversy, as discussed in the link.

There are also known biases in the output of pulse oximeters by skin color (https://www.nejm.org/doi/full/10.1056/nejmc2029240). Perhaps a situation can arise where a clinician is making an important therapeutic choice based on the numbers -- like whether a patient needs to be on a ventilator or not -- but isn't at the bedside. It might be nice to have race in the chart to determine how reliable the pulse oximeter numbers may or may not be.

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