eattherich
06-03-2008, 06:14 PM
Genetics in the Service of the People
by Paula Andaló
Advances in genomics can—and should—lead to progress in public health.
Back in the sixties when he was a student leader at the University of Buenos Aires, Victor Penchaszadeh had no idea that the famous DNA spiral discovered by James Watson just a decade earlier would become the cornerstone of his own professional life. But had he known, he might have guessed that his personal mission would one day be to combine genetics with social medicine and the promotion of health as a human right.
http://www.paho.org/Images/DD/PIN/persp23_010.jpg
Argentine geneticist Victor Penchaszadeh.
Today, at the pinnacle of a 40-year career that has spanned pediatrics, epidemiology, and bioethics as well as genetics, Penchaszadeh is adamant in his belief that the benefits of the genomics revolution should not be a luxury for the rich but instead be within everyone’s reach.
“Genetics may seem secondary to a society’s basic needs, but it really needs to be integrated into general health services,” he says.
To promote this idea, Penchaszadeh teamed up in 1996 with the Pan American Health Organization and the World Health Organization to establish the PAHO/WHO Collaborating Center on Community Genetics at the Mailman School of Public Health at Columbia University in New York. Now, a decade later, he has returned to his native Argentina to start a regional program on Medical Genetics and Public Health, housed at PAHO’s country office in Buenos Aires. The program will help Latin American and Caribbean countries assess the safety and effectiveness of new genetic technologies and will produce policy documents on technical and bioethical issues related to genetics, health, and human rights.
Not just testing
For Penchaszadeh, genetic services are a public health tool that must be put at the service of the people. The reasons are simple and practical: knowing that someone has, or is predisposed to, a given illness or condition can help them avert the most serious consequences of that illness. Many genetically determined conditions are preventable or at least benefit from early treatment. And today, “there are at least 1,000 disorders that can be diagnosed through DNA analysis, either in an affected individual or through a prenatal test in early pregnancy,” notes Penchaszadeh.
Many of these conditions can have an impact on collective health, in both rich and poorer countries. Examples include sickle cell disease, which is common in Cuba, and Huntington’s disease, which has unusually high incidence in the Lake Maracaibo region of Venezuela.
But the link between genetic services and public health is not always appreciated, says Penchaszadeh. “The countries that have managed to have an impact on these diseases have acted at the level of primary health care, using effective prevention technologies,” he observes.
To serve public health, he explains, genetic services must consist of more than testing; they must encompass diagnosis, treatment, follow-up, and counseling of patients at risk or suffering from genetic conditions.
In practice, genetic services have developed erratically in Latin America and the Caribbean over the past decade. In nearly all the region’s countries, genetic services are heavily concentrated in cities and promoted more by individual providers than by government health authorities motivated by public health concerns. This situation promotes inequity at the level of individual care, says Penchaszadeh, since access to genetic services is effectively limited to patients with money. It also skews the focus of genetic services.
“It runs the risk that genetic services can end up limited to private health care, with a focus on expensive procedures like chromosome analysis, prenatal diagnostics, and paternity testing”—and with little attention to prevention and follow-up.
Penchaszadeh says a singular exception to this trend is Cuba, where “genetic services were incorporated into basic health services from the beginning, with clear community objectives.”
Meanwhile, in some countries of the region, clinical genetics does not yet exist as a medical specialty.
Seeking support
There are a number of barriers to further progress. Chief among them is the region’s more obvious need to deal with priorities such as infectious and nutrition-related diseases, which makes it harder to view genetics as a primary health tool. And there are widely held misconceptions about genetics: for example, that it is inherently expensive and deals only with rare and exotic diseases, or that its preventive value is linked to pregnancy termination, which remains illegal in most countries of Latin America.
Penchaszadeh counters the latter by arguing: “Genetics has an under-appreciated preventive value. How many neural tube defects could be prevented if we promoted consumption of folic acid during pregnancy?”
Despite the economic and cultural obstacles, there are today in Latin America some 500 doctors specializing in clinical genetics and providing a range of services to patients. At the academic level, there are formal training programs in medical genetics in Argentina, Brazil, Chile, Cuba, and Mexico. In addition, many of the region’s countries have professional associations linking experts in the field, and recently the Latin American Network of Human Genetics (RELAGH) became the region’s representative organization to the International Society of Human Genetics Societies.
“Official support for these initiatives is crucial to put them in a framework of equity and accessibility in order for them to have a real impact on public health,” says Penchaszadeh.
Government support is important for another reason. If genetic services are endorsed by governments, this guarantees some regulation, not only of procedures but of the uses of genetic information collected on patients. The issue goes beyond patient confidentiality into the realm of bioethics. “We mustn’t forget that under the guise of genetics, people have embraced dangerous theories about genetic determinism and racial superiority,” says Penchaszadeh.
He adds that there is the risk that, in the interest of prevention, genetics programs can undermine reproductive rights and increase discrimination against people with disabilities. To prevent such problems, WHO includes a strong bioethical component in all its programs for prevention and treatment of genetic diseases.
For Penchaszadeh, a key task is deciding which tools and methods are most efficient at the population level, for not only detection but also prevention of genetic disorders. Primary prevention of neural tube defects, for example, is a simple—if not yet routine—matter of fortifying diets with folic acid. Even Down syndrome can be prevented, by raising awareness about the impact of maternal age and discouraging childbearing among older women. Yet despite this, “in practice, programs on Down syndrome are mostly limited to screening of high-risk pregnancies using fetal chromosome analysis, after which there are two choices: continuing or interrupting the pregnancy,” says Penchaszadeh. That presents parents with a dilemma that has not only moral but also—in most of the region’s countries—legal implications.
At home in Buenos Aires, where he recently resettled after 25 years in the United States, Penchaszadeh insists that genetics is today at a crossroads. Its supporters must clearly define the ethical framework and the appropriate applications of genetics if they hope to move forward.
The challenge is twofold, he says: “to accelerate research on preventive and therapeutic applications of knowledge derived from genomics, and to ensure that these benefits are accessible to the population as a whole.”
Paula Andaló is an Argentine journalist and former staff member of the Pan American Health Organization’s Office of Public Information. http://www.paho.org/english/dd/pin/Numb ... ticle4.htm (http://www.paho.org/english/dd/pin/Number23_article4.htm)
World Social Forum, by Victor Penchaszadeh, MD
Anyone who knows me, knows that I am not much of a writer of tales and impressions. Nevertheless, the experience of participating in the World Social Forum (WSF) has been so powerful that I want to share it. I believe that the WSF is already a "classic," where one can come to join the "beautiful people" of the planet (taking "beautiful" as a moral, not a physical attribute); the fighters for social justice, the right to health, a sustainable economy to the service of the people, the right to work, the rights of the disabled, and the globalization of justice, as well as those who struggle against large corporations, discrimination, poverty, the payment of the immoral and obscene external debt, and the militarization of the world.
The energy at the Forum was sensational. It was in all the people. Not just in the participants of the Forum, but also in the millions of inhabitants of the city of Porto Alegre, which I have baptized "The City of the Beautiful People." The inauguration march for the Forum was stupendous and I am a veteran of many marches. It was an indescribable pleasure to see scores of activists with banners, intoning happy choruses. Happiness was really the common denominator at the march; people with smiling faces and hearts brimming with optimism. Those of us lucky enough to have been in Porto Alegre, Brazil, between January 23rd and 28th, 2003, can have no doubt that "another world is possible" (the theme of this year's conference). Besides, after participating in the discussions and debates at the WSF, it became very clear that "another world" is not just possible, it is absolutely necessary.
Prior to the WSF, I participated in the Forum by the Health of the Towns, organized jointly by the Latin American Association of Social Medicine and several international organizations for the right to health. We debated how to make this right a reality, even though it has been so degraded by the commercialization of health care. I gave a presentation on the risks of genetic research done by bio-tech and pharmaceutical industries, which contribute to expanding the terrible inequities in healthcare, and how to face that risk without adopting anti-scientific positions. I also presided over a panel organized by the geneticists of Porto Alegre on the social aspects of genetics in the context of health, the commercialization of genetics and healthcare, racism and, of course, cloning.
The main task before beginning each day was to analyze conscientiously the program of hundreds of simultaneous activities and to decide how to distribute one's time to take advantage of as much as possible. There were at least three main places in distant points of the city where meetings were held: the Gigantinho (a sports stadium), port warehouses (enormous sheds transformed into conference rooms and round tables) and the Catholic University (with small and large classrooms). In all these centers there were swarms of people of all ages who were transformed instantly from strangers to new friends. I returned with a notebook loaded with names and addresses from around the world.
The theme around which the agenda was organized was the telling of stories of people around the world confronting the effects of corporate globalization. One was the fight against the privatization of water. I must confess I had not realized corporate greed had already gone so far as to threaten the vital liquid produced and recycled by the Earth that should be the patrimony of humanity and an essential public utility.
I dedicated myself to sessions on new social movements and the analysis of the political situation in Latin America. My wife Graciela lent special attention to the movements of women, and those that contribute to the empowerment and autonomy of communities. As a proud father, I cannot help but mention the activities of our daughter Anal’a, who works in the American organization Jobs With Justice, which last year received the Letelier Moffit prize for its work for the rights of workers, and which headed a delegation of 60 people to the WSF. Anal’a marched like an ant attending to its multiple commitments: translating between English, Spanish, French and Portuguese, and representing her organization in a fascinating debate on the interface between social movements and political parties.
Also very important were the activities denouncing militarization and the wars that the US empire and the large multinational corporations are carrying out in our continent, above all in Colombia. Great importance was also given to the movement against war with Iraq. It was exciting to see and to listen to American peace activists promising to fill the streets of New York with a million persons against the war.
There was also no lack of "stars" giving testimonies and presentations at the WSF: Noam Chomsky, Eduardo Galeano, Samuel Ruiz, Adolfo Gilly, Aleida Guevara, Sebastiao Salgado, Samir Amin, Gustavo Gutierrez, Leonardo Boff, Ignacio Ramonet, Olga Marquez, Norita Corti–as, Mar’a Adela Antokoletz, Adolfo Perez Esquivel and many more.
Although there is a great deal more I could recount, I will finish here. But not without emphasizing that what was most gratifying and exciting at the WSF was not to listen to the "stars" of the international social movement. It was the contact with the common people of the entire world who went to share their experiences in the struggle to make "another world" of justice and peace possible. I close these impressions with the conviction that the majority of the people of the planet wants peace and social justice, and that the history of man is a constant struggle for those objectives. And so the struggle continues. http://www.dghonline.org/nl11/hr-wsf.html
by Paula Andaló
Advances in genomics can—and should—lead to progress in public health.
Back in the sixties when he was a student leader at the University of Buenos Aires, Victor Penchaszadeh had no idea that the famous DNA spiral discovered by James Watson just a decade earlier would become the cornerstone of his own professional life. But had he known, he might have guessed that his personal mission would one day be to combine genetics with social medicine and the promotion of health as a human right.
http://www.paho.org/Images/DD/PIN/persp23_010.jpg
Argentine geneticist Victor Penchaszadeh.
Today, at the pinnacle of a 40-year career that has spanned pediatrics, epidemiology, and bioethics as well as genetics, Penchaszadeh is adamant in his belief that the benefits of the genomics revolution should not be a luxury for the rich but instead be within everyone’s reach.
“Genetics may seem secondary to a society’s basic needs, but it really needs to be integrated into general health services,” he says.
To promote this idea, Penchaszadeh teamed up in 1996 with the Pan American Health Organization and the World Health Organization to establish the PAHO/WHO Collaborating Center on Community Genetics at the Mailman School of Public Health at Columbia University in New York. Now, a decade later, he has returned to his native Argentina to start a regional program on Medical Genetics and Public Health, housed at PAHO’s country office in Buenos Aires. The program will help Latin American and Caribbean countries assess the safety and effectiveness of new genetic technologies and will produce policy documents on technical and bioethical issues related to genetics, health, and human rights.
Not just testing
For Penchaszadeh, genetic services are a public health tool that must be put at the service of the people. The reasons are simple and practical: knowing that someone has, or is predisposed to, a given illness or condition can help them avert the most serious consequences of that illness. Many genetically determined conditions are preventable or at least benefit from early treatment. And today, “there are at least 1,000 disorders that can be diagnosed through DNA analysis, either in an affected individual or through a prenatal test in early pregnancy,” notes Penchaszadeh.
Many of these conditions can have an impact on collective health, in both rich and poorer countries. Examples include sickle cell disease, which is common in Cuba, and Huntington’s disease, which has unusually high incidence in the Lake Maracaibo region of Venezuela.
But the link between genetic services and public health is not always appreciated, says Penchaszadeh. “The countries that have managed to have an impact on these diseases have acted at the level of primary health care, using effective prevention technologies,” he observes.
To serve public health, he explains, genetic services must consist of more than testing; they must encompass diagnosis, treatment, follow-up, and counseling of patients at risk or suffering from genetic conditions.
In practice, genetic services have developed erratically in Latin America and the Caribbean over the past decade. In nearly all the region’s countries, genetic services are heavily concentrated in cities and promoted more by individual providers than by government health authorities motivated by public health concerns. This situation promotes inequity at the level of individual care, says Penchaszadeh, since access to genetic services is effectively limited to patients with money. It also skews the focus of genetic services.
“It runs the risk that genetic services can end up limited to private health care, with a focus on expensive procedures like chromosome analysis, prenatal diagnostics, and paternity testing”—and with little attention to prevention and follow-up.
Penchaszadeh says a singular exception to this trend is Cuba, where “genetic services were incorporated into basic health services from the beginning, with clear community objectives.”
Meanwhile, in some countries of the region, clinical genetics does not yet exist as a medical specialty.
Seeking support
There are a number of barriers to further progress. Chief among them is the region’s more obvious need to deal with priorities such as infectious and nutrition-related diseases, which makes it harder to view genetics as a primary health tool. And there are widely held misconceptions about genetics: for example, that it is inherently expensive and deals only with rare and exotic diseases, or that its preventive value is linked to pregnancy termination, which remains illegal in most countries of Latin America.
Penchaszadeh counters the latter by arguing: “Genetics has an under-appreciated preventive value. How many neural tube defects could be prevented if we promoted consumption of folic acid during pregnancy?”
Despite the economic and cultural obstacles, there are today in Latin America some 500 doctors specializing in clinical genetics and providing a range of services to patients. At the academic level, there are formal training programs in medical genetics in Argentina, Brazil, Chile, Cuba, and Mexico. In addition, many of the region’s countries have professional associations linking experts in the field, and recently the Latin American Network of Human Genetics (RELAGH) became the region’s representative organization to the International Society of Human Genetics Societies.
“Official support for these initiatives is crucial to put them in a framework of equity and accessibility in order for them to have a real impact on public health,” says Penchaszadeh.
Government support is important for another reason. If genetic services are endorsed by governments, this guarantees some regulation, not only of procedures but of the uses of genetic information collected on patients. The issue goes beyond patient confidentiality into the realm of bioethics. “We mustn’t forget that under the guise of genetics, people have embraced dangerous theories about genetic determinism and racial superiority,” says Penchaszadeh.
He adds that there is the risk that, in the interest of prevention, genetics programs can undermine reproductive rights and increase discrimination against people with disabilities. To prevent such problems, WHO includes a strong bioethical component in all its programs for prevention and treatment of genetic diseases.
For Penchaszadeh, a key task is deciding which tools and methods are most efficient at the population level, for not only detection but also prevention of genetic disorders. Primary prevention of neural tube defects, for example, is a simple—if not yet routine—matter of fortifying diets with folic acid. Even Down syndrome can be prevented, by raising awareness about the impact of maternal age and discouraging childbearing among older women. Yet despite this, “in practice, programs on Down syndrome are mostly limited to screening of high-risk pregnancies using fetal chromosome analysis, after which there are two choices: continuing or interrupting the pregnancy,” says Penchaszadeh. That presents parents with a dilemma that has not only moral but also—in most of the region’s countries—legal implications.
At home in Buenos Aires, where he recently resettled after 25 years in the United States, Penchaszadeh insists that genetics is today at a crossroads. Its supporters must clearly define the ethical framework and the appropriate applications of genetics if they hope to move forward.
The challenge is twofold, he says: “to accelerate research on preventive and therapeutic applications of knowledge derived from genomics, and to ensure that these benefits are accessible to the population as a whole.”
Paula Andaló is an Argentine journalist and former staff member of the Pan American Health Organization’s Office of Public Information. http://www.paho.org/english/dd/pin/Numb ... ticle4.htm (http://www.paho.org/english/dd/pin/Number23_article4.htm)
World Social Forum, by Victor Penchaszadeh, MD
Anyone who knows me, knows that I am not much of a writer of tales and impressions. Nevertheless, the experience of participating in the World Social Forum (WSF) has been so powerful that I want to share it. I believe that the WSF is already a "classic," where one can come to join the "beautiful people" of the planet (taking "beautiful" as a moral, not a physical attribute); the fighters for social justice, the right to health, a sustainable economy to the service of the people, the right to work, the rights of the disabled, and the globalization of justice, as well as those who struggle against large corporations, discrimination, poverty, the payment of the immoral and obscene external debt, and the militarization of the world.
The energy at the Forum was sensational. It was in all the people. Not just in the participants of the Forum, but also in the millions of inhabitants of the city of Porto Alegre, which I have baptized "The City of the Beautiful People." The inauguration march for the Forum was stupendous and I am a veteran of many marches. It was an indescribable pleasure to see scores of activists with banners, intoning happy choruses. Happiness was really the common denominator at the march; people with smiling faces and hearts brimming with optimism. Those of us lucky enough to have been in Porto Alegre, Brazil, between January 23rd and 28th, 2003, can have no doubt that "another world is possible" (the theme of this year's conference). Besides, after participating in the discussions and debates at the WSF, it became very clear that "another world" is not just possible, it is absolutely necessary.
Prior to the WSF, I participated in the Forum by the Health of the Towns, organized jointly by the Latin American Association of Social Medicine and several international organizations for the right to health. We debated how to make this right a reality, even though it has been so degraded by the commercialization of health care. I gave a presentation on the risks of genetic research done by bio-tech and pharmaceutical industries, which contribute to expanding the terrible inequities in healthcare, and how to face that risk without adopting anti-scientific positions. I also presided over a panel organized by the geneticists of Porto Alegre on the social aspects of genetics in the context of health, the commercialization of genetics and healthcare, racism and, of course, cloning.
The main task before beginning each day was to analyze conscientiously the program of hundreds of simultaneous activities and to decide how to distribute one's time to take advantage of as much as possible. There were at least three main places in distant points of the city where meetings were held: the Gigantinho (a sports stadium), port warehouses (enormous sheds transformed into conference rooms and round tables) and the Catholic University (with small and large classrooms). In all these centers there were swarms of people of all ages who were transformed instantly from strangers to new friends. I returned with a notebook loaded with names and addresses from around the world.
The theme around which the agenda was organized was the telling of stories of people around the world confronting the effects of corporate globalization. One was the fight against the privatization of water. I must confess I had not realized corporate greed had already gone so far as to threaten the vital liquid produced and recycled by the Earth that should be the patrimony of humanity and an essential public utility.
I dedicated myself to sessions on new social movements and the analysis of the political situation in Latin America. My wife Graciela lent special attention to the movements of women, and those that contribute to the empowerment and autonomy of communities. As a proud father, I cannot help but mention the activities of our daughter Anal’a, who works in the American organization Jobs With Justice, which last year received the Letelier Moffit prize for its work for the rights of workers, and which headed a delegation of 60 people to the WSF. Anal’a marched like an ant attending to its multiple commitments: translating between English, Spanish, French and Portuguese, and representing her organization in a fascinating debate on the interface between social movements and political parties.
Also very important were the activities denouncing militarization and the wars that the US empire and the large multinational corporations are carrying out in our continent, above all in Colombia. Great importance was also given to the movement against war with Iraq. It was exciting to see and to listen to American peace activists promising to fill the streets of New York with a million persons against the war.
There was also no lack of "stars" giving testimonies and presentations at the WSF: Noam Chomsky, Eduardo Galeano, Samuel Ruiz, Adolfo Gilly, Aleida Guevara, Sebastiao Salgado, Samir Amin, Gustavo Gutierrez, Leonardo Boff, Ignacio Ramonet, Olga Marquez, Norita Corti–as, Mar’a Adela Antokoletz, Adolfo Perez Esquivel and many more.
Although there is a great deal more I could recount, I will finish here. But not without emphasizing that what was most gratifying and exciting at the WSF was not to listen to the "stars" of the international social movement. It was the contact with the common people of the entire world who went to share their experiences in the struggle to make "another world" of justice and peace possible. I close these impressions with the conviction that the majority of the people of the planet wants peace and social justice, and that the history of man is a constant struggle for those objectives. And so the struggle continues. http://www.dghonline.org/nl11/hr-wsf.html