Race Norming and Bioethics
“Race-norming”— also called “race correction,” “ethnic adjustment,” and “race adjustment” — refers to the adjustment of medical test results or medical risk assessment algorithms based on a patient’s race, the practice however, can and often does, include additional factors such as age, assigned sex at birth, and pain tolerance. Race-norming is believed to have been integrated into clinical risk assessment tools in 1981. Similar to the “soft-bigotry of low expectations” the practice is predicated on othering BIPOC communities, and most adversely affects Black people.
“Race norming” was first used by the Carter Administration and then further implemented and extended by Reagan in 1981 […] before being subsequently outlawed by George H.W. Bush’s so-called “Civil Rights Act” of 1991.
-Dave Zirin, The Nation
Race-norming garnered greater mainstream attention in 2020 when the NFL was sued again after its handling of a 2013 lawsuit in which they agreed to pay $765 million as compensation for brain damage that players suffered as a result of recurrent concussions. The subsequent lawsuit was initiated by two Black former NFL players, Kevin Henry and Najeh Davenport. Henry and Davenport asserted that they would have been compensated in the initial suit had they been White and therefore not subjected to the “full demographic correction,” requested and imparted by clinicians contracted by the NFL’s Baseline Assessment Program. This “correction” relied on an old pseudoscience that claimed Black people have lower cognitive function than White people requiring Henry, Davenport, and any other unnamed claimants within the 73.97% of BIPOC NFL players to have significantly more acute cognitive decline than their White teammates in order to be compensated for the injuries–mostly dementia– that the league and its administration failed to protect them from.
According to an e-mail attained by ABC news, one clinician wrote to another, “I’m realizing and feeling regretful for my culpability in this inadvertent systemic racism issue. As a group we could have been better advocates.”
-Pete Madden, ABC News
The prevalence of systemic racism in clinical science trials and our healthcare system is a particularly sobering reality that is exacerbated as it crosses the intersections of class, race, ability, and gender. Despite a preponderance of scientific data to suggest human beings are far more alike than they are different–99.9% per David S. Jones, a Harvard historian and medical ethicist–the US, in particular shirks scientific evidence in place of the social construct of race. In many of the adjusted trials, this is done selectively without factoring in the ways the US also shirks livable wages, affordable and adequate housing, and accessible medical care within the same adjusted (BIPOC) groups.
Examples include, but are not limited to:
eGFR: (Glomerular filtration) [A test used to] determine how much blood passes through filters in the kidneys. The equation is based on research from a 1999 paper that suggested that Black people have better kidney function than white people because Black people are supposedly more muscular, a notion that isn’t evidence-based and was used to justify slavery…
VBAC, (Vaginal Birth After Caesarean) [A] calculator to predict the amount of risk a person would have with a vaginal birth after having a C-section in their previous pregnancy. The algorithm predicts higher risks for anyone who identifies as Black or Hispanic, yet the study used to develop the VBAC calculator also found that marital status and insurance type were correlates for VBAC success but weren’t included in the algorithm.-Vox
In the aforementioned examples the results garnered from each ethnic adjustment “influence practitioners” to avoid thorough examination and evaluation resulting in an increase of illness and death in BIPOC patients, while subsequently maintaining that the adjustments are made because the patients are racially predisposed to an increased likelihood of illness and death.
It is only within recent years amidst the onslaught of attention given to the insidious nature of racial inequities pervasive throughout our nation, the ruin brought upon by COVID-19, and the formation of social justice organizations like White Coats for Black Lives, that reform and reassessment have taken hold in medicine. The A.P.A and AMA have dug their heels in to do the work, and incoming medical students have begun avowing to uphold declarations of equitable treatment, devoid of impartial bias, as part of their Hippocratic Oath: an oath stating the obligations and proper conduct of doctors.
Bioethicist Laura Guidry-Grimes agrees this year has been a “paradigm-shifting time” that has brought a “reckoning” for medicine; she says she likes that the University of Pittsburgh version of the Hippocratic oath discusses COVID-19. “[It acknowledges] that we have been challenged and learned the hard way … that what we’ve been doing is not enough,” says Guidry-Grimes, an assistant professor in the department of Medical Humanities and Bioethics at the University of Arkansas.
-UALR Public Radio
It is indeed a long-overdue time of reckoning; compassionate, ethical, and equitable healthcare is a fundamental human right.
Dr. Dede Testubayashi’s (Deh-deh Teh-tsu-bye-ya-she) expertise is DEI + product + business value and integrating them into a team and organization's best practices. She has extensive experience building frameworks and guidelines to integrate product inclusion into the development process, and driving adoption as an integral portion of phased and prioritized roadmaps for teams to execute against. Dede is a member of the Equity Army run by Annie Jean-Baptiste, a group focused on educating organizations on Product Inclusion. She's also a founding member of Tech Ladies, a group focused on inclusivity in tech, and is working on two new publications; a memoir and a product inclusion guide.
