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 Editorials | At Issue | August 2005 
Gene Map Sparks Ethics Debate
 Theresa Braine - The Herald Mexico
| | Bacchus - Peter Paul Rubens (1638). Detail of chromosome 15 taken from The Obesity Gene Map Database. |
The recently launched public-private partnership that will map the genes of Mexicans in hopes of developing specific, tailor-made treatments for various diseases could be a boon or a boondoggle, depending how the ethics are handled.
Although the idea of "race-based medicine," as it has been nicknamed, makes some ethicists and rights groups squeamish, most agree that if handled correctly, mapping the genetic differences between ethnic groups could lead to lifesaving medicine.
Mexico's National Institute of Genomic Medicine recently announced it is working with California-based Applied Biosystems Group and IBM's Healthcare and Life Sciences division to establish an applied biosystems sequencing and genotyping unit and conduct research focusing on health issues related to the Mexican population.
In the largest study to date of Latin American genes based on the Human Genome Project, 600 blood samples will be collected from six regions in Mexico, including the Yucatan. In Yucatan, for instance, university students and professors have volunteered to give samples.
Each sample contains the complete genome of the donor, 99.7 por ciento of which will match all humans. But the 0.3 por ciento is what can make the difference between a disease or condition manifesting in one person and not another. Each gene is designated by a letter. The Mexican samples will be compared by computer and the differences mapped. Organizers said a report could be issued next summer.
Ailments to be studies include diabetes, asthma and hypertension. Health officials and others involved in the project say such research could usher in a new medical era for the region.
"I think societies that have discreet populations all need to do this," said Tony White, CEO of Applera, the parent of Applied Biosystems. Future therapies may only work on certain genotypes, so populations who don't study their own gene pattern may not have access to effective medicine.
"If all the drugs were developed in Switzerland, for example, the Swiss are in great shape but the Japanese might have a problem," White said. "So the different populations have to be represented now in this whole cataloguing of disease and gene associations as it leads to new therapies, because there are probably going to be genotype-specific solutions."
"We see in genetic medicine a true paradigm change from one of diagnosis and treatment to one of foreseeing and preventing," said Mexican Health Secretary Julio Frenk at the project-launch ceremony at the country's Genomic Medicine Institute, which was established in July 2004 to research ways to improve health care by using recently mapped genetic information.
Project leaders also introduced a new "genetic chip" that holds genetic coding the way a CD holds music. Although it costs US15 million to map an individual's gene code today, the hope is that someday it can be done for as little as US1,000 in a simple procedure administered at birth.
The institute also is offering graduate courses in genetic medicine. Those involved in the project say there are implications not only for Mexicans but also for the millions of Latin Americans living in the United States and other countries.
The Mexican population's 60-plus Meso-American native groups, plus Spanish blood, make it unique, said the center's director, Gerardo Jiménez Sánchez.
"It's fundamental that we not arrive late at the table of history," Frenk said at the ceremony.
The United States has been leading this initiative, said Applied Biosystems' spokeswoman Sophia Patel, followed by Europe and now Latin America. They are looking at the human genome and identifying what individual genes do and looking at various diversity within populations. Similar research is also underway in Japan, China and Africa.
For example, in June the U.S. Federal Drug Administration (FDA) approved the heart disease drug BiDil for use in African-Americans because it worked so well in trials in patients from that group.
"Even though we're 99.9 percent the same, all humans, there is some genetic diversity," Patel said, adding that eventually researchers will "be able to identify genes in certain populations that make them susceptible to certain diseases." However, such focus on race makes some squeamish with the fear that targeted medicine could be used to exclude people from insurance policies, for instance.
Michael Brannigan, vice president of Clinical and Organizational Ethics at the Kansas City-based Center for Practical Bioethics, said in an e-mail to The Herald that "certainly this event promises to be a landmark for Latin America."
But, he added, "it is not without its ethical concerns, one of the most prominent being that of fairly allocating the needed funding for research capabilities and facilities."
And there's "the question of justice will the citizens of Mexico be the principal beneficiaries or will most of the benefits go to research companies?" he said. "Partnerships, both internal and external, need fair monitoring."
Applera's White said the ethics will be up to those who make society's rules and laws.
"That's a social issue," he said. "There are a lot of ways you can misuse technology like this. The reality is that this technology is going to do a lot more good than it does harm." He pointed out that insurance companies already exclude people if they smoke, are overweight or have family history of a condition. Besides, "genes are not definitive," he added. "Genes will tell you about a predisposition or a propensity to a disease. It doesn't mean you're going to get it. So insurance companies would put themselves out of business if they excluded everybody who had a risk gene, because we all have a risk of something."
Theresa Braine is a freelance reporter based in Mexico. |
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