Deceptive Promises of Cures for Disease
by Sarah Sexton
first published 30 July 2002
Billions of dollars are now being poured into genetic research. But any resulting products are likely to be available only to those who can afford to pay for them. There will be little benefit for the majority in developing countries, especially when health services are being dismantled and privatised. More genetic research will not alter the conditions in which people become susceptible to many diseases. Combining new genetic research with a market approach to health exacerbates the racist aspect of both. New genetic research also reinforces discourses of eugenics and overpopulation.
Billions of public and private dollars are now being poured into genetic research. Even some critics of new human genetic technologies seem to concede that these massive investments may be worthwhile. The Catholic theology professor David Tracy, for example, has said that "[o]pponents of human cloning (as I am) cannot afford to ignore the benefits that such cloning might provide for all humankind." His comment is easily extended to the drugs and tests that might be realized through the new technologies. But will the products of genetic research in fact be accessible to "all humankind?"
Probably not, because both the public and private health services that would disseminate the new drugs and procedures make cost-benefit decisions and value judgements about who should get what treatment. Many of the groups now considered to be the biggest potential beneficiaries of genetic research, such as the elderly and the seriously ill, are left by the wayside as treatments are rationed. In contrast, however, health services and insurance companies may vigorously promote some products, such as prenatal and adult gene testing, if they believe they might save the costs of supporting people in the long term.
Moreover, the increasing privatization of health care services around the world means that access to health care and medical products, including drugs and tests, is increasingly based not on need but on ability to pay--or to get health insurance. Private insurers tend to select the best risks--people who tend to be healthy anyway--and to reject those who have chronic illnesses or who cannot afford the insurance. The more health care financing is based on insurance, the more it will rely on assessments of individuals' presumed risk of ill-health--something gene testing is poised to make enormously more complicated and supposedly accurate.
Even without widespread gene testing, about one in six people in the United States does not have health insurance, while millions of others are underinsured. With genetic screening becoming more widespread, that number will only grow, as more people are rejected by insurance companies or fail to keep up premium payments that will undoubtedly increase after "susceptibilities" are discovered.
Just as private health services and insurers leave out people who can't pay, so biotech research leaves out the illnesses from which those people suffer. Because large numbers of the people who can't pay suffer from tropical diseases, those diseases are largely ignored by researchers. While pneumonia, diarrhea, tuberculosis and malaria account for more than one-fifth of the world's disease burden, they receive less than 1 percent of the funds devoted to health research. The private sector is not inclined to put its own money into researching products for "financially non-solvent" people, which is why it requires public subsidies to do so.
Public funds for health care services are also in short supply. The International Monetary Fund (IMF) has compelled many debt-ridden countries to cut back their public spending on health in order to be considered eligible for loans. Those public health services that still remain in these countries have been pushed into charging their patients "user fees." The result? People simply use medical services less--and sometimes die of easily-treatable diseases such as tuberculosis because they cannot afford the treatment.
The Philippine government now spends less than 3 percent of its budget on health--and nearly 30 percent on servicing its debt. Half of all hospital beds are now private, with most costs paid by patients. An insurance system covers only one-third of the population. Just 3 percent of the World Bank's $1.8 billion poverty alleviation program in The Philippines goes to fund health care. Of that, most is for projects related to women's reproduction--in effect, "population management." The World Bank lends more money to turn the former U.S. naval base at Subic Bay into a "freeport" base for corporations such as Oriental Petroleum than it lends for Filipinos' health.
A market-based approach to health and genetic research not only drives up the costs of health care, but also distracts attention from the factors that make people ill in the first place. Spurred by the growing fascination with genes, it encourages policymakers and the public to see medicine primarily as a process of "fixing" diseased individuals, and good health as something to be bought and sold in the marketplace by individual consumers rather than as a political goal for society to work toward.
More genetic research will do little or nothing to alter the conditions in which people become susceptible to many diseases. A recent proposal to research the gene for diarrhea, for example, ignores the social and economic conditions that make diarrhea a child-killer in so many parts of the world. The incidence of just three leading killer diseases in the developing world-- malaria, diarrhea, and AIDS--would drop dramatically if mosquito nets, clean water and condoms were more accessible. Dr Tikki Pang, Director of the Research Policy & Cooperation Department at the World Health Organization (WHO), warns that the health of Africans and Asians could actually worsen as a result of the rise of the genetic industry. While it may be reassuring to think that sequencing the genes of the parasite which causes malaria will lead to new drugs and insecticides, it is likely, as Pang notes, that "any such discoveries will be patented and only developed at prices unaffordable to those who need them most."
Similarly, studies have found that many people with Parkinson's disease have a history of exposure to pesticides, herbicides, or industrial solvents. Yet these studies have evoked little interest. Instead, media attention and legislation have been directed towards treatments such as customised individual tissue replacements via human embryo cloning. In the case of diabetes, meanwhile, the WHO projects that incidence of the disease will more than double by 2025, with up to 300 million people affected. Obviously, we cannot all suddenly be sprouting diabetes genes, and even if the new research were able to pinpoint all individuals genetically predisposed to the disease, this would do nothing to address the causes of its growing incidence.
In the area of human reproduction, the new genetic economy may focus on prenatal testing--while neglecting the link between birth defects and, say, the pesticides found in the fathers' and mothers' environment, water, and food. Yet studying that link could have significant benefits for public health, if not for biotech companies. European Union researchers, led by the London School of Medicine and Tropical Hygiene, recently studied women living near 23 toxic landfill sites in Britain, Denmark, France, Belgium and Italy. They found that the risk of having a baby with a chromosomal abnormality such as Down's increased by 40 percent for women who lived within two miles of a site.
With cancer, as well, the rush to genetic solutions continues to dangerously divert public attention. A large majority of human cancers are influenced by carcinogens in workplaces, houses, air, water, and food. The overall incidence of cancer has been steadily rising in the industrialized world for the last 45 years--a rise that cannot be explained by the increasing age of populations alone. In the United States, the overall ageadjusted cancer death rate is 40 percent higher among Black men than white, and 20 percent higher among Black women than white. "If you are a poor woman or a Black woman, your chances of contracting and dying of either breast or cervical cancer are significantly higher than for other women," says health activist April J. Taylor, who has worked on health issues related to Black women for a number of years. "Many Black families live near toxic waste sites, have access to poor quality food and poor health care, and are living in immuno-suppressing conditions that can cause gene mutations."
Combining new genetic research with a market approach to health thus exacerbates the racist aspects of both. In the United States, for instance, many Black women have for decades been subjected to coercive sterilization or contraception on the grounds that they are "unfit" or too many or do not deserve to procreate. Whether consciously or not, the products of the new genetic research are likely to be put into the service of racist practice. Rutgers University legal scholar Dorothy Roberts points out the danger that people will come to accept Black women "being forcibly implanted with Norplant or jailed because they gave birth to a child while addicted to drugs." By the same token, Roberts suggests, tests claiming that "certain children are genetically predisposed to crime" may help justify, in the public eye, racist government programs of reproductive control.
Indeed, one of the biggest concerns associated with the new genetic research is how neatly it reinforces discourses of eugenics and overpopulation. If the simple existence of 6 billion people (rather than the actions of a small but privileged minority of those people) is believed to be destroying the planet, then reducing those numbers becomes the top priority-- and both consumers and policymakers will become more interested in trying to ensure that those children who are allowed to be born are as "perfect" as possible in the current society's eyes.
But who determines who shall be born and who not, and according to what criteria and what assumptions? In the nineteenth century, no one suggested that princesses of the royal families of Europe be sterilized because they were carriers of the gene for hemophilia. Rarely mentioned in discussions about the supposed benefits for all humanity of the new genetic research is the power of dominant groups to decide which diseases and conditions constitute "unacceptable" health risks, and to determine who counts as a "legitimate" mother.
Most health inequalities cannot be attributed either to different genetic susceptibilities or to differences in medical care, and are only partially explained by such health-related individual behavior as smoking, drinking, diet, and exercise. They are due rather to the effects of the different social and economic circumstances in which people live, including unemployment, poverty, housing, and pollution. "Much more important than the small differences medicine can make in survival from cancers and heart disease are differences in the incidence of these diseases," says British sociologist Richard Wilkinson, who has long studied health inequalities within societies. All the broad categories of causes of death in developed countries --heart disease, respiratory illness and cancer, all of which are main targets of biotech research--are related to income distribution. "To feel depressed, cheated, bitter, desperate, vulnerable, frightened, angry, worried about debts or job and housing insecurity; to feel devalued, useless, helpless, uncared for, hopeless, isolated, anxious and a failure.... It is the chronic stress arising from these feelings which does the damage," says Wilkinson.
Even those few conditions clearly linked to single genes often cry out not so much for more genetic research as for more attention to the environment of the sufferers. Consider sickle-cell disease. Chuck Adams, a social worker in a children's hospital in Philadelphia who deals with the social problems faced by sickle-cell patients and their families, points out that living in a cold, abandoned building without adequate food must heavily affect those who have sicklecell disease. "They just happen to have a chronic genetic disorder," he says, "but being poor was probably the first disorder that they had to deal with." Genetic research is yielding what is scientifically and financially feasible, not necessarily what is needed by sick people. Health For All, not Genes 'R Us, needs to be placed at the centre of public health research, policy and funding.