Medical research hits cultural roadblocks
Friday, 14 September 2007
Stephen Leahy
Many new medical technologies to improve the lives of people in the global South fail to be adopted not because of the costs but because of ethical, social and cultural issues, a new study reveals.
These issues include community and public engagement, cultural acceptability and gender, according to the comprehensive study featuring interviews with leading health experts in developing countries and published Monday in the U.S. peer-reviewed online journal PLoS Medicine.
Improper consultation with affected communities resulted in public pressure to end to medical trials of tenofovir, an antiviral medication used to treat HIV, in Cambodia, Cameroon, and Nigeria. In that instance, the community was commercial sex workers who weren't properly consulted and would not benefit from the trials.
"Those trials represented an investment of more than 100 million dollars and we never completed," said study co-author Jim Lavery, a scientist at the Centre for Research on Inner City Health and Centre for Global Health Research in the Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto.
There were also issues with governments over the trials because sex workers were involved, Lavery told IPS. "This failure revealed the complexity of advancing medical research even if it is well-intentioned," he said.
Lavery also acknowledged that there is a growing perception that drug trials and other medical research being done in the South will only benefit those in the North.
"We can eliminate that perception by changing the reality by sharing the benefits of this research with local communities," he added.
The report, "Grand Challenges in Global Health: Ethical, Social and Cultural Issues Based on Key Informant Perspectives", is the first of its kind to provide advice in a systematic way on these issues in a developing world context, according to study co-author Jerome Singh of the Centre for the AIDS Programme of Research (CAPRISA) in Durban, South Africa.
The study was conducted by an international team of bioethics experts from the McLaughlin-Rotman Centre for Global Health in Toronto (MRC), and supported by the Grand Challenges in Global Health (GCGH). The GCGH is a 450-million-dollar effort to achieve scientific breakthroughs against diseases that kill millions of people each year in the world's poorest countries.
"Concurrent with the rapid growth of scientific research in developing countries, there are more reports of projects that face challenges related to ethical, cultural and social concerns," said Peter Singer, a senior scientist at the MRC and a co-author of the report.
"Our goal was to anticipate issues that could be faced by such programmes and try to prevent them as this important work moves forward," Singer told IPS.
Developing world experts in the study stressed the need for researchers to create opportunities to listen to and understand the concerns and interests of the communities in which they work. "For sustainability of any programme, it has to be owned by the community," said Dara Amar, a professor at St. John's Medical College in Bangalore, India.
At the same time, whether people who need a technology will use it is influenced by cultural issues related to religion, history, gender, sexual practices and contraceptive use, and the existence of a "culture of science".
"Every technology is viewed first off in the context of how it might destroy the culture," Calestous Juma, Kenyan-born director of the Programme on Science, Technology and Innovation at Harvard University says in the study.
"It is impossible to overestimate the importance of ethical, social and cultural issues," says MRC Senior Scientist Abdallah Daar, another leader of the study team.
"If any of these are ignored, you can run into serious problems," Daar said in an interview.
One of the 44 projects under the Grand Challenges in Global Health (GCGH) initiatives is the genetic control of dengue-carrying mosquitos in southern Mexico. The question arose of how to effectively consult and work with the local communities, but it turns out that there is very little detailed information on how to do this, said Lavery.
Over the next two years, 10 case studies from around the world will be done on how to engage local communities. "We'll learn what's working and what's not which will be enormously valuable to the global health community," he said.
Such ethical and social concerns need to be at the centre of these scientific research projects, says Singer.
And while the simple lack of sanitation and clean water contributes the most to health crises in many parts of the world, advanced research into new vaccines and technologies is necessary so that there will be future health improvements.
Internet
Many new medical technologies to improve the lives of people in the global South fail to be adopted not because of the costs but because of ethical, social and cultural issues, a new study reveals.
These issues include community and public engagement, cultural acceptability and gender, according to the comprehensive study featuring interviews with leading health experts in developing countries and published Monday in the U.S. peer-reviewed online journal PLoS Medicine.
Improper consultation with affected communities resulted in public pressure to end to medical trials of tenofovir, an antiviral medication used to treat HIV, in Cambodia, Cameroon, and Nigeria. In that instance, the community was commercial sex workers who weren't properly consulted and would not benefit from the trials.
"Those trials represented an investment of more than 100 million dollars and we never completed," said study co-author Jim Lavery, a scientist at the Centre for Research on Inner City Health and Centre for Global Health Research in the Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto.
There were also issues with governments over the trials because sex workers were involved, Lavery told IPS. "This failure revealed the complexity of advancing medical research even if it is well-intentioned," he said.
Lavery also acknowledged that there is a growing perception that drug trials and other medical research being done in the South will only benefit those in the North.
"We can eliminate that perception by changing the reality by sharing the benefits of this research with local communities," he added.
The report, "Grand Challenges in Global Health: Ethical, Social and Cultural Issues Based on Key Informant Perspectives", is the first of its kind to provide advice in a systematic way on these issues in a developing world context, according to study co-author Jerome Singh of the Centre for the AIDS Programme of Research (CAPRISA) in Durban, South Africa.
The study was conducted by an international team of bioethics experts from the McLaughlin-Rotman Centre for Global Health in Toronto (MRC), and supported by the Grand Challenges in Global Health (GCGH). The GCGH is a 450-million-dollar effort to achieve scientific breakthroughs against diseases that kill millions of people each year in the world's poorest countries.
"Concurrent with the rapid growth of scientific research in developing countries, there are more reports of projects that face challenges related to ethical, cultural and social concerns," said Peter Singer, a senior scientist at the MRC and a co-author of the report.
"Our goal was to anticipate issues that could be faced by such programmes and try to prevent them as this important work moves forward," Singer told IPS.
Developing world experts in the study stressed the need for researchers to create opportunities to listen to and understand the concerns and interests of the communities in which they work. "For sustainability of any programme, it has to be owned by the community," said Dara Amar, a professor at St. John's Medical College in Bangalore, India.
At the same time, whether people who need a technology will use it is influenced by cultural issues related to religion, history, gender, sexual practices and contraceptive use, and the existence of a "culture of science".
"Every technology is viewed first off in the context of how it might destroy the culture," Calestous Juma, Kenyan-born director of the Programme on Science, Technology and Innovation at Harvard University says in the study.
"It is impossible to overestimate the importance of ethical, social and cultural issues," says MRC Senior Scientist Abdallah Daar, another leader of the study team.
"If any of these are ignored, you can run into serious problems," Daar said in an interview.
One of the 44 projects under the Grand Challenges in Global Health (GCGH) initiatives is the genetic control of dengue-carrying mosquitos in southern Mexico. The question arose of how to effectively consult and work with the local communities, but it turns out that there is very little detailed information on how to do this, said Lavery.
Over the next two years, 10 case studies from around the world will be done on how to engage local communities. "We'll learn what's working and what's not which will be enormously valuable to the global health community," he said.
Such ethical and social concerns need to be at the centre of these scientific research projects, says Singer.
And while the simple lack of sanitation and clean water contributes the most to health crises in many parts of the world, advanced research into new vaccines and technologies is necessary so that there will be future health improvements.
Internet