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Stop Ward Connerly's "Racial Privacy Initiative"

http://www.nlg.org/sf/rpi.html

Ward Connerly has sponsored the "Racial Privacy Initiative" (RPI), a California ballot initiative slated for the November 2002 general election. RPI would prohibit state and local governments, public universities and school districts from collecting or using information about race, ethnicity, color or national origin. If this passes, the impact on efforts to improve health could be enormous. Here's why:

1. Data on race helps us measure how far we've come in eliminating racial differences in health status.

In the mid-1990s, the federal government acknowledged that racial disparities in health still exist. Without critical information on race, public health officials will not be able to pinpoint the reasons behind the racial differences in health status and take steps towards eliminating these problems. Data tracking the racial disparities revealed that:· Infant mortality rates and percent of low-birthweight of infants of Black/African- American women is the highest of all racial groups; · More than 40 percent of Native American/Alaskan Native women still do not get prenatal care in their first trimester; · Latinos are the most likely to be uninsured of all racial groups; · Asians/Pacific Islanders have the highest tuberculosis rates of any other racial group; · Vietnamese women have the highest cervical cancer incidence rates of all women; · White women have the highest breast cancer incidence rates of all women.

2. "One-size-fits-all" health campaigns do not work in California.

California has one of the most racially diverse populations in the country. Data on race helps public health professionals tailor their immunization, mammography, HIV/AIDS, prenatal and other educational campaigns for the populations who need the information most. Without data on race, public health departments will be forced to use a "one-size-fits-all" method to do outreach and education.

3. Data collection on race should be improved, not eliminated.

The race categories that we use today need to be improved to reflect the diversity of California. The expansion of race and ethnic categories by the Census Bureau helps us recognize that there are more than just a few racial groups in the U.S. More information, not less, needs to be collected so we can get a better understanding of health beliefs and practices of California's diverse population.

4. Race is nothing to be ashamed of or to be kept private.

Certain federal laws already protect us from the misuse of data to discriminate - race cannot be asked on applications for jobs, bank loans, or school applications. Places where race data is asked - the Census, health studies, hospital records - can only help us in tracking and getting rid of the multiple burden of poor health, poverty, and racial discrimination that many people in California bear.

What you can do:

If you are a provider or an advocate: Give us examples of successful programs that have used race/ethnicity data to address the needs of particular populations.

If you are a researcher: Help us document all of the various types of data that would be impacted by this initiative. Tell us which health data sets you have used that could be threatened. Below is one such letter from a Director of Medical Research.

Sign on to our efforts: We are asking all interested organizations and individuals to complete and submit the attached endorsement form.

For more information, please contact:
Jan T. Liu, MHS
Asian & Pacific Islander American Health Forum
Tel: 415-954-9952 Fax: 415-954-9999 Email: Jliu@apiahf.org

Bertram H. Lubin, M.D.
Director of Medical Research
Children's Hospital Oakland Research Institute
5700 Martin Luther King Jr., Way
Oakland, CA 94609
Ph. (510) 450-7601
Fx. (510) 450-7930
Email: blubin@chori.org
Web: www.chori.org

March 12, 2002

Jan T. Liu, MHS
Asian and Pacific Islander American Health Forum
942 Market St., Ste. 200
San Francisco, CA 94102

Dear Mr. Liu,

I would like to address my deep concerns regarding the Racial Privacy Initiative. As the Director of Medical Research and a Pediatrician interested in research and service that will eliminate health disparities arising related to racial and socioeconomic factors, I find the RPI unconscionable. How can we possibly address the needs of children who suffer health consequences associated with race if we are unable to collect racial demographic information? How can we translate the important new medical genetic information demonstrating relationships between race, susceptibility to disease, therapeutic response to medication, and environmental toxicology and genetic background if we do not have the type of racial information the RPI initiative would prevent us from collecting?

The National Institutes of Health recently developed a new center called the Center for Research in Health Disparities and Minority Health. This branch of the NIH intends to develop research centers across the United States to address health consequences related to race and socioeconomic status. We, and a number of programs in California, as well as throughout the United States, intend to submit an application for NIH funding to develop a center to address health disparity issues. In order to submit an application for such a center, racial demographic data must be collected and included in the submission. If the RPI were law in this state, we could not collect the necessary information to submit such an application, and children as well as adults in this state who could benefit from the research conducted in such a center, would unnecessarily suffer.

Indeed, the Center for Research in Health Minority Health and Health Disparities was created by a Congressional mandate to address the excessive medical problems that occur in our society in certain racial groups. The Children's Hospital and Research Center at Oakland takes care of a disproportionate share of ethnic minorities. We plan and base interventions on the community we serve and use racial data to identify the most needy children. With almost epidemic proportions, we have children with asthma, diabetes, obesity, sexually transmitted disease, sickle cell anemia and birth defects in specific racial groups. To not have racial information in databases of people living in this State would prevent us from obtaining knowledge in regard to the cause of these diseases and to define optimal therapies that are appropriate for the culture in which they have to be applied.

I hope that the electorate will defeat the RPI and prevent legislation that would impair goals to eliminate health disparities in our society. I would be happy to help in any efforts required to prevent passage of the Racial Privacy Initiative.

Respectfully,
Bertram Lubin, MD
Director of Medical Research
Children's Hospital and Research Center
Oakland, California