"Of course I worry about breast cancer," my friend Mimi recently confessed. "Statistics show that Jews inherit it, and also, my mother had lunch with three of her [Jewish] friends, and they all had breast cancer. It's a genetic disease. If it's not that I don't know what other factors it would be."
I sighed, not knowing exactly where to start. Ever since I began researching the ever-broadening field of genetics and disease, I'd found myself in conversations like this one. It wasn't just that Mimi, a well-educated, discerning New Yorker, was misguided, but that the whole foundation upon which she understood her medical profile was faulty.
For her, the medical findings she'd read about Jewish cancer genes had taken on the tint of destiny. This was the final twist in a history of defining race that has come full circle. For the last century reputable scientists have increasingly insisted that race and ethnicity are nothing more than folk categories with no biological basis. That was in stark contrast to the argument we think of as coming from evil eugenicists and David Duke henchmen. Now, however, the latest findings issuing from the field of genetics suggest a different story. They seem to say that racial categories have firm genetic foundations and therefore important health implications for all of us.
How else to explain the discoveries of a Jewish gene for breast cancer, black genes for hypertension and asthma and a mutant white gene that immunizes against AIDS? Knowing the genetic predispositions of our race or ethnicity, these findings suggest, could save our lives.
Suddenly racial categories are our friends.
But alas, Mimi, along with much of the public, has been badly misinformed. The truth is that her risk as a Jewish woman isn't so different from her risk as anywoman. Betty Friedan, /directory/topics/barbara_bush/index.html">Barbara Bush and Angela Davis all have about the same one-in-eight chance of contracting breast cancer. Although all cancer is the result of genetic damage, inherited genetic mutations account for less than 10 percent of breast cancer. Genetic damage caused by the environment -- including everything both within and without the womb -- accounts for the rest. If any group should be anxious about the vicissitudes of group membership, it's black women in the U.S., who, despite their slightly lower risk of contracting breast cancer, are 25 percent more likely to die from this disease than white women.
But is this race or poverty in disguise? Death rates for breast cancer among white women are down, due largely to early detection, but numbers for black women under the age of 50 are increasing.
So why all the hype about a Jewish breast cancer gene? Looking for genetic causes of disease evokes the adage about searching for a quarter under a lamppost, far from where one dropped the coin, because the light there is better. Scientists examined genetics and Jews and found something to say about genetics and Jews. While studies vary, certain genetic alterations appear in about 1.7 percent to 2 percent of Ashkenazi Jews and in about .7 percent of non-Jews. Hence the media announces with great fanfare that Jews are more than twice as likely to have a specific genetic pattern associated with breast cancer. But the disparity is a statistical ruse for researchers who want more funding and for a public fascinated by race and genes.
While it's true that 1.7 is more than twice as much as .7, what's far more relevant to health and policy concerns is that Jews are only 1 percent more likely than anyone else to have these mutations. As champagne corks pop and glasses clink over the latest and greatest genetic discovery, little new has been discovered about what causes breast cancer or how to prevent it.
Much of the recent attention to disease risk and genes comes from the brouhaha surrounding the Human Genome Project.
"The promise of the genome project sounds a lot like the promise of the cure for cancer which has been around since the turn of the century," says Barbara Brenner, executive director of San Francisco's Breast Cancer Action. "But we're still going to funerals. The research is not right. Because nobody is born with breast cancer. Even among women who have an inherited predisposition, where their risk is very high, 50 percent never get breast cancer. Something has to happen to make our genes go haywire, to trigger the process that leads to breast cancer. But we're not spending a lot of time doing research on this."
Like the excitement over the Jewish gene, the study of black/white differences in hypertension has also lent credibility to old-fashioned attitudes about race and genes. When studies appeared showing that blacks are three times more likely than whites to die from heart disease, genetic reductionists jumped on the data as evidence of significant genetic differences. Yet subsequent studies revealed that blacks in West Africa have lower blood pressure than their U.S. counterparts.
Rather than consider this new evidence, proponents of the black gene for high blood pressure speculated on the selection effects of the slave passage. Absent an iota of physical evidence, they hypothesized an African water retention gene that enabled some Africans to survive the dehydration of forced transport, while the ones who resembled their low blood pressure descendants in West Africa died, leading to a predisposition to hypertension among blacks in the U.S. (The theory is that increased water retention increases pressure on one's heart and arteries, but this hasn't been proven).
A long-term investigation compared the hypertension rates of people who settled in Chicago with those who remained in a village in Africa. Results showed that those who move to the U.S. quickly acquire blood pressure rates similar to those of other African-Americans. Yet this old conjecture about genetic differences continues to be repeated in reputable journals and by leading geneticists.
"As for all other components of racial health differentials, genetic explanations have been invoked to explain the black predilection to hypertension," says Dr. Richard Cooper of the Loyola University Medical School in Chicago. "No direct evidence of any sort exists to support the genetic hypothesis."
But if a gene doesn't explain the difference, then what does?
One of the greatest correlates with high blood pressure is stress, an affliction that one might imagine bears down disproportionately on African-Americans. Living with poverty, increased incarceration, broken families in neighborhoods with environmental hazards and a society that scrutinizes your actions can put a person on edge. Knowing you might be stopped by the checkout clerk or by the police can make you nervous. In a large-scale study comparing white and black populations, Harvard University's Nancy Krieger and Stephen Sidney attributed the different rates of certain diseases, such as high blood pressure, largely to racism. When David Williams, a sociology professor at the University of Michigan, measured the blood pressure of blacks and whites entering stores in the Detroit area, blacks' blood pressure went up while that of whites did not.
Do such studies offer definitive proof that racial differences in disease are based on nurture rather than nature? Of course not. But with diseases that are known to be largely affected by lifestyle, it seems strange to be searching for a genetic cause without first exploring the social realities that might make people more prone to certain diseases.
"For my patients a lot of the issues around health are around access to money," says Dr. Hillary Kunins, chief resident at Montefiore Medical Center in the Bronx, whose patients come almost exclusively from disadvantaged black neighborhoods. "They're poor and mostly they don't have jobs and the jobs they do have suck and it's depressing and it's hard to make a good life." She notes that stress-related illnesses such as anxiety and depression, which are so prevalent in her patients, "are also the ones about which people like to talk about genetics. But all this is so much about social structure that I feel powerless."
Now, you might argue that such conflicting viewpoints call for more investigation of race and genes, not less, especially if this research could help treat disease. Don't genes affect our health in ways that deserve medical experimentation? Or, as Dr. Simeon Taylor, a National Institutes of Health administrator and diabetes researcher, said to me: "If you were the patient, wouldn't you want to know everything you could about the genes that are making you sick, including the racial component to this?"
The answer is not obvious. The relative rarity of diseases caused by single mutations and the paucity of treatments for mutations raise significant if subtle questions about the very use of racial or ethnic categories in medical research. When environmental factors are known agents of diseases, genetic studies buttressing racial thinking may pose a medical danger. The disparity between the number of blacks at risk for sickle cell anemia in comparison to those at risk from racism suggests that the government might want to rethink its medical research priorities. The only genes that came close to eliminating all the Jews in Europe were the ones Hitler imagined.
If I were a patient I might want the hospital to abandon assistance to other patients and devote all its resources to me; to use drugs the FDA deems unsafe or if widely used would pose immune threats to others; or to rob others to pay for my expenses. Yet our society prohibits these actions, recognizing that individual desires do not always yield the most prudent results for either oneself or the public. When health risks are overwhelmingly due to environmental causes -- be it an adjacent Superfund site or a crime-ridden neighborhood -- then inquiry into genetic group differences may have the potential to harm more people than it helps.
In other words, if racism stems from views about innate differences and medical research now is emphasizing innate differences, then this work may well harden the very attitudes that result in the residential, occupational and wealth segregation so strongly associated with disease-rate differences.
Environmental justice groups make just this point in the case of asthma.
Since 1980 the number of people with asthma in the United States has increased 75 percent. This magnitude of change is impossible to attribute to changes in genes. Yet the NIH is funding research into the genetic causes of asthma. Meanwhile, in the Bayview/Hunter's Point area of southern San Francisco, you don't need a microscope to spot the 325 toxic waste sites, two PG&E power plants and two Superfund sites, not to mention the nearby congested freeway. Nor do you need complicated regressions to figure out that a 15 percent rate of asthma among the area's youth -- more than double the rate of the rest of the Bay Area -- is not because their genes double their risk. "We're calling it an epidemic," said Dana Lanza, director of literacy for Environmental Justice, an organization that advocates on behalf of residents there. Lanza adds that in addition to astronomical rates of hospitalizations, "The community says there have been asthma-related deaths."
"The most interesting thing is that PG&E says the asthma is because there's so much secondhand smoke in black communities," says Lanza, and Bayview/Hunter's Point is 90 percent black. Yet according to Susana Toure of San Francisco's Tobacco Free Project, 23 percent of whites and 23 percent of blacks smoke in San Francisco (compared with 13 percent of Latinos and 12 percent of Asians or Pacific Islanders).
The Bay Area is not alone in the concentration of disease in black neighborhoods. Thirteen percent of children in the Bronx have asthma, which is more than double the rate in adjacent Manhattan. In East Harlem the rate of hospitalization for asthma is five times the rate for the rest of Manhattan. When I asked Peggy Hunter of the West Harlem Environmental Action group what she thought about addressing the asthma disparity by genetic research, she said, "Genetic damage is caused by environmental exposures. There's no genetic inheritance in isolation." And yet one can scroll through hundreds of medical studies that attempt to discern small genetic differences between blacks and whites, for everything from cancer to high blood pressure to, yes, asthma.
In 1997 the NIH announced: "Asthma Genes Linked to Regions Unique to Different Racial and Ethnic Groups." The press release noted differences in the rates of asthma susceptibility and hospitalization among different racial and ethnic groups, but it never mentioned environmental factors or the high rates of asthma in industrialized as opposed to nonindustrialized regions. Instead, Dr. Claude Lenfant, director of the National Heart, Lung and Blood Institute, said the study "provides a possible explanation for the substantial differences in disease prevalence and severity that we have observed among different racial and ethnic groups in the U.S."
And yet the tiny genetic differences scientists may have discovered -- and attempts to replicate studies of these sorts largely fail -- pale in magnitude alongside three national surveys showing asthma to be roughly twice as high for individuals in households below the poverty level as for those above it. Perhaps the NIH will begin a new study of the asthma genes linked to regions unique to different socioeconomic groups.
So why is the government more interested in funding research on genes than on environmental toxins?
"The people at the highest levels of setting health research policy in this country made their careers on molecular biology," says Breast Cancer Action's Brenner. "It's complicated because if we're talking about environmental exposure -- air, soil, water, food or the body's environment -- we're exposed to lots of things at the same time and over time. But we have not spent the kind of energy we've spent on molecular biology to evaluate the consequences of multiple exposures."
Brenner contends that such research could have effects far beyond the world of medical research. "It's going to be very difficult to do this because the most important questions that will be asked and answered will lead us to asking very serious questions about capitalism. If the way we've structured our economy is making us sick and we can prove that, then the public pressure for fundamental change will be very powerful. And there are a lot of people who don't want to see that happen."