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May the RPI (Racial Privacy Initiative) RIP (Rest in Peace)
Date: October 17, 2003
Proposition 54, the "Racial Privacy Initiative (RPI)," was defeated in California. One reason was that the medical community garnered massive opposition to the medical stipulations in the proposition, which read:
PARAGRAPH (f): "Otherwise lawful classification of medical research subjects and patients shall be exempt from this section."
What exactly does that mean? Who precisely are "medical research subjects and patients?" Is this a gain or a loss for public health statistics that use racial classifications for policy information and decisions? Does this cover volunteer subjects? What about patients participating in FDA studies or those getting paid for research? What about the risk factors based on race for private patients?
Some people are up in arms about how the medical community defeated Prop. 54 because they think that there is no validity in racial statistics for medical purposes, but take a look at these compelling examples:
"Many people have never heard of hereditary hemochromatosis (HH), the most common genetic disease among white people-even though it sometimes causes diabetes."
Diabetes Forecast (the magazine of the American Diabetes Association), November, 2003
"The sudden deaths of 450,000 people a year in the United States are linked to irregular heartbeats, and a new study has found 13 percent of black Americans have a gene variation that greatly increases their risk of developing a rare type of abnormal cardiac rhythm."
Associated Press, August, 2002, reporting on the journal Science study
"It has been estimated that 4.8 million Americans suffer from heart failure, 660,000 of which are black. Research has demonstrated that black patients are twice as likely as white patients to suffer from heart failure. In addition, death rates from heart failure are more than twice as high in black patients. This disparity in outcomes is attributed to many factors, including pathophysiology found primarily in black patients that may involve nitric oxide (NO) insufficiency arising from either reduced NO production, enhanced NO inactivation or both."
Press Release dated July 31, 2002 by The Association of Black Cardiologists
"A recent study of African-American women found that they have a higher blood level of a protein known as insulinlike growth factor (IGF-1), which seems to encourage cancer cells to grow faster in the laboratory. 'These particular proteins make cancer cells more active,' explains Linda Vahdat, M.D., medical director of the Weill Medical College Breast Cancer Center of Cornell University."
"Race and Breast Cancer: the survival gap, Self, October 2002
Is there evidence that race is a factor in medicine? Maybe some of the causes are environmental or geographical location. Perhaps individual DNA would be a better marker for health risks, but many people are against giving the "system" copies of their DNA. There are pros and cons for all of it, but we do know that we can't afford to stop collecting racial data for medical purposes-it's just too risky.
For the record (and those misguided folks who are saying that I was against Prop. 54) I was not, and am not against the spirit of Prop. 54: that for most purposes the collection of racial data can be abolished. It's a worthy fight. I have said from the very inception of Project RACE that I am all for doing away with racial categories in the United States, but I don't think that is going to happen in my lifetime or my children's lifetime, so my choice is to fight to have them identified as what they are: multiracial. Ward Connerly, who is responsible for Prop. 54, is making progress, in spite of those in his own movement who are shooting him in the foot. He also knows that many of us will never consider supporting his movement unless the medical exemption is broadened and clarified. He also knows I did not come out against his proposition on this Web site or in any other public forum, although I was asked to. This is his battle, and I have a huge amount of respect for him because he is doing something for change, and not just talking like so many other so called activists.
What should the multiracial community be doing now? Think about these facts:
FACT:
There is a total lack of information about health risks and trends in public health statistics for the multiracial population.
FACT:
In the United States a person who is multiracial can be easily misclassified as one race at birth and another at death.
FACT:
The non-inclusion of multiracial people in clinical trials by every pharmaceutical manufacturer in the U.S. puts multiracial people at risk for drug overdosing and under-dosing every day.
FACT:
The United States Food and Drug Administration has not acted on the critical need for the inclusion of multiracial people in clinical trials.
FACT:
There is a shortage of bone marrow donors for the multiracial population.
FACT:
The U.S. Department of Health and Human Services can tell us NOTHING about health risks or trends in public health statistics for multiracial children and adults, although they have studied every other racial and ethnic group.
FACT:
We desperately need accurate classification for multiracial children and adults.
FACT:
Multiracial people deserve an equal chance for medical care in this country.
This is the perfect opportunity to get a "multiracial" or a "check all that apply without reallocation of data" on medical forms! Project RACE has been working with medical schools, emergency medical personnel, hospitals, etc. to institute better racial classification options for multiracial patients on a national level. Now that the opponents of Prop. 54 in California have finally, publicly admitted the need for accurate racial data for medical reasons, hold their feet to the fire! Force their hands to include biracial and multiracial people in their data. I'll be urging the Project RACE members all over California to do just that. Anyone want to join us?
Susan Graham
Executive Director
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