Why do doctors ask for your race?

Question

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?

Answer 1

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/

Answer 2

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.

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

Answer 3

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

Answer 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

Answer 5

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). *

Answer 6

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).

Answer 7

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.