Proposition 54, the Oct. 7 ballot measure that promises to create a colorblind society, doesn’t look quite so benign to medical researchers in Berkeley and environs, who say that, author Ward Connerly’s protestations notwithstanding, the measure could do severe damage to public health programs.
Take Contra Costa County, where health department officials have used racial data to reverse a long-standing gap between black and white women in early stage breast cancer detection rates.
Opponents of Prop. 54, which would prevent state agencies from classifying people by race, ethnicity or national origin, say that if the initiative passes, programs such as the one in Contra Costa County would not be possible.
But proponents of the measure, including Connerly, disagree. They say the medical exemption clause clearly allows researchers to gather such data.
The measure seems to have stalled in the polls, and the health community appears united in its denunciation of the measure.
They point to cases like Contra Costa County’s breast cancer program as an outreach program that would have been impossible without 1992 racial and ethnic data from the Northern California Cancer Center and the California Cancer Registry.
In 1991 only 40 percent of Contra Costa County black women with breast cancer were diagnosed at an early stage where treatment is more likely to lead to a positive outcome, compared to 71 percent of white women.
It was this knowledge, health officials said, that gave the county’s Breast Cancer Partnership a basis for targeting their outreach efforts.
By 2001, their efforts succeeded, and new data showed that 71 percent of both white and black women were diagnosed with breast cancer at an early stage.
“This was a huge issue, we knew through research that early detection was a key ingredient in successful treatment,” said Kim Cox, program manager for women’s health in Contra Costa County Health Partnership. “We knew one of the reasons had to be access.”
According to language included on the ballot set for Oct. 7, the proposition states that “otherwise lawful classification of medical research subjects and patients shall be exempt.”
But Dee W. West, the chief scientific officer for the Northern California Cancer Center, believes the work of the Northern California Cancer Center would suffer from the confusion the law would create.
“Cancer rates are reported by hospitals and by physicians to the regional registry,” West said. “I don’t think hospitals will be as likely to act in getting that information if they’re not sure whether they should be doing it and if state agencies aren’t asking them to do it. If that information is not included in a person’s medical record, we’re going to have a tough time collecting it.”
Rachel Moran, a law professor at UC Berkeley, said the “medical exemption” language included in the ballot initiative is too vague to determine who would be considered “medical research subject” or “patient.”
So while researchers may be able to collect data from people who are currently classified as “patients” or “subjects,” it may preclude getting the same from breast cancer survivors no longer considered patients, Moran said.
It may also prevent researchers from determining whether there are cancer clusters within certain racial or ethnic communities, she said.
“When you’re surveying people, they are not necessarily ‘a patient’ and they’re not necessarily ‘a medical research subject,’” Moran said. “Sometimes cancer runs in families, something it varies by race. Technically, none of these people would be considered research subjects.”
Moran said the language might also create problems for health and social welfare researchers.
“The exemption also raises the question of what will or will not count as medical research,” Moran said. “This may create a problem for researchers who want to gather data on...communities [at risk to] develop alcohol and drug addiction. Do these surveys really count as ‘medical?’ You could also make the argument that community based health that is preventive in nature rather than reactive would also not be included.”