By: Melissa M. Mertl
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The World Health Organisation (WHO) is seeking to raise US$20 million to act as an honest broker between nations reaping the results currently emerging from the sequencing of human and other genomes and countries that can’t afford to engage in genome research programmes.
A new report released today (30 April) spells out the many ways in which the UN organisation could help direct genomics research towards meeting the needs of the poor in the developing world, including both providing technical guidance and spearheading international debate on related ethical issues.
In particular, the report points out that the range of potential applications, from treatments for diseases to more cost-effective diagnostic techniques, is enormous. The challenge, however, is to persuade potential donors in richer nations that the effort is worth the money it is likely to cost.
When the virtual completion of the human genome was announced two years ago, WHO director general Gro Harlem Brundtland asked the organisation’s senior advisory committee to report on the possibilities of genomics for world health, paying special attention to the needs of developing countries.
The advisory body turned to geneticist David Weatherall, former director of the Institute of Molecular Medicine at the University of Oxford, to write the report, together with bioethicist Dan Brock at Brown University in the United States and social scientist Heng-Lee Chee of the Universiti Putra Malaysia.
More than a year and three international committee meetings later, the result is a 241-page survey on the international state of genomics, published under the title Genomics and World Health, which underlines the need to promote the science of genomics and its applications to diseases endemic in developing countries.
Certain areas in genomics cry out for international leadership, says Weatherall. For example, he believes that an international organising body such as WHO should play a role in assessing new genetic technologies, helping set up ethical frameworks, and building research and training programmes in poor nations.
The team that drafted the report says it was well aware that genomics research is considered by many to be a luxury at a time when so many health needs remain unmet in the world’s poorest countries, partly due to a lack of adequate basic healthcare. A recent study indicates that of 11 million children who died in developing countries in 1998, nearly 5 million died from diseases for which there are already good vaccines available.
Health policy professor Chan Chee Khoon of the Universiti Sains Malaysia in Penang says that he fears that a focus on genomics can be just a “distraction” if other, more pressing, concerns, such as access to healthcare, are not pushed in parallel.
Weatherall agrees. “We heard this [concern] from everybody,” he says. And the report stresses that capacity building in genomics must take place alongside the more traditional approaches of clinical practice, public health, and clinical and epidemiological research. “At the moment, the biggest challenge is to get functional health care programmes in the poorest countries set up,” says Weatherall.
But, he adds, this doesn’t mean genomics should be put aside for later. “Work in the basic lab always takes a while before [being] translated,” Weatherall says, pointing out that it took 70 years for researchers to develop the antibiotic streptomycin after the tuberculoisis bacterium was discovered in 1880.
“It takes a long time for international organisations to develop the programmes, the tools, and the resources necessary to apply genomics to health care, particularly for developing countries,” says Weatherall. “Let’s get the ethical framework set up and the partnerships in place. Then, as further developments take place, they will be ready for them.”
The genomics report is due to be presented to the WHO General Assembly in Geneva in two weeks’ time (13 May). If it receives a positive response, the next challenge will be to find the money to put the programmes in place. “Without money, [the report] won’t have any effect at all,” predicts Win Hide, director of the South African National Bioinformatics Institute in Bellville, South Africa.
Report coordinator Tikki Pang, WHO director of research policy and cooperation, concedes that “the big issue is resources”. He says WHO would need about US$20 million a year to administer the type of programmes listed in the report’s recommendations. And this would need to be collected as “extrabudgetary” contributions, falling outside the money gathered as regular budgetary contributions from member states (there is a precedent: two of WHO’s research programmes — one on tropical diseases and the other on reproductive health — already run on extrabudgetary resources).
One possibility would be to tap into a fund proposed last December by WHO’s Commission on Macroeconomics and Health. This proposed setting up a Global Health Research Fund with an annual budget of US$1.5 billion, which would be available to researchers in all countries through peer-reviewed grant application.
But that fund has yet to be approved, and Pang isn’t counting on it. He therefore anticipates that WHO will need to get creative. Convincing regular contributors such as the World Bank and USAID to part with cash to help develop high-tech genomics initiatives when so many basic needs remain unmet will be a challenge.
Brundtland is prepared to approach industry for support, and Pang hopes that large international pharmaceutical companies might turn out to be a potential source of funding for their programmes.
John Sulston, who led the UK arm of the international human genome sequencing project, is supportive -— if cautiously — of approaching industry. “I do feel there is a collective responsibility,” says Sulston, who acted as an advisor at one of the three regional consultation meetings. “But I can only see it working if it is not done on a purely goodwill basis.”
Sulston suggests that, just as industry is required to pay taxes, governments might reach an agreement requiring large pharmaceutical players to pay into a fund that distributes a small portion of the profits coming from genomics-based industries to poorer nations.
“This is not an area where rich countries can afford to say they do not have a problem,” says Sulston, describing current gross disparities in health spending and availability as unsustainable. “WHO is obviously a place where these things should be sorted out.”
The report Genomics and World Health lists the following recomendations: To help its member states, the WHO should:
- Assess new advances in genomics for their potential for health care. Some DNA-based vaccines, therapeutics, and diagnostics are already at the point where they can be used to address communicable diseases of developing nations.
- Provide technical assistance to aid in establishing centres for clinical genetics and genetic research programmes targeted to local health problems.To help build biotechnology capacity, foster the development of partnerships between govenment, academic and public sector research institutions, indusry and other funders.
- Expand its role in devoloping bioinformatics capabilities through regional networking, cross-country partnerships, and short-term training programs for young graduates.
- Assist member countries in developing regulatory structures and ethical frameworks to address patient rights and research guidelines in controversial areas like cloning. Furthermore, WHO “should be in a position to anticipate new ethical issues” and offer advice to its member states, the report states.
- Advocate for increased investment in genomics research, intellectual property policy that does not further inequalities in health care, and the promotion of public education programmes in genomics.
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