Race in Clinical Data
Send comments to Matt Anderson, firstname.lastname@example.org.
We would like your comments on the following proposed guidelines for the use of race in the clinical database.
These guidelines were developed by a group of clinicians concerned over the formulaic use of race in clinical presentations (e.g. "This is a 32 year old white male who...."). We felt this practice tended to stigmatize minority patients and give a biological basis to what was really a social phenomenon. Nonetheless, there were good reasons not to exclude race from clinical presentations. These guidelines are our best approximation at how race should be included.
Our goal here was to address how race should be used in the care of individual patients. We did not specifically design these guidelines to address the separate (but related) questions of how race should be used in public health and epidemiology.
We plan to present these guidelines with a more detailed (article length) justification. We hope to complete final forms of both documents by the end of the summer. We are most interested in hearing the thoughts of other persons interested in this topic. Please send a copy of any comments you might have to: email@example.com.
Matt Anderson MD
Chinita Fulchon, Ph.D.
Susan Moscou, FNP, MPH
Daniel R. Neuspiel, M.D., M.P.H.
Guidelines for the Use of Race in the Clinical Database
1. Race is not a proxy for genetic variation.
When a patient's specific genetic variant is known (ie. SS disease) this should be mentioned. Otherwise, specific information about genetic variation in families, ethnic or geographic origin, and migration status provide more precise information about genetic variation. This information should be recorded in the history.
Race is primarily a social construction. Clinicians should encourage medical researchers to use more biologically meaningful categories to characterize human population variability than the current racial ones.
2. Race should not be used as a proxy for social class.
Social class can provide clinically useful information and should be described specifically. Information about occupation, occupational exposure, length of employment, employment history, insurance status, housing, and neighborhood provide specific information that help determine risks and to guide therapeutic decisions.
3. Racial identification should be recorded in the social history.
Self-described racial identification can identify sources of stress, resources, strengths, and supports available to patients and families. It belongs in the social history and not in the first sentence of the presentation.
4. The most valid way to determine a patient's race is to ask the patient.
5. Racism impacts on health and healthcare.
Past. current or anticipated experiences provide information about stress and potential sources of psychological or physical harm. Racism also impacts health, access to healthcare, treatment regimens, and patient-provider encounters. For this reason self-identified race should be included in the administrative database kept by clinics.
6. Ethnic & cultural background can provide clinically useful information and should be described specifically.
Ethnicity should not be confused with race. Ethnicity provides information about cultural values. orientations to medical treatment, spirituality, death and dying choices that are relevant to relationships with patients and treatment choices.