ACHR recommendations on ELSI of human genetics
In 2002, Dr Gro Harlem Brundtland, Director-General Emerita, World Health Organization asked the Advisory Committee on Health Research (ACHR) to prepare a report entitled Genomics and World Health examining the implications of advances in genomics and other critical areas of biotechnology. As an advisory body with a consultative mandate to support the World Health Organization in carrying out its constitutional role of promoting and coordinating research relating to international health work, the Advisory Committee on Health Research presented comprehensive recommendations for guiding the development and application of genomics in Member States.
In this section the recommendations specific to ELSI of human genetics have been highlighted. There recommendations were made to the 191 WHO Member States, the global and six regional secretariates of WHO and to WHO representatives stationed in 110 countries. They address the areas for technical cooperation needed between WHO and its Member States, WHOs normative function and advocacy role as well as its convening power in establishing global partnerships, to ensure that genome technology is used to reduce rather than exacerbate global inequalities in health status.
The key ACHR recommendations on the ELSI of human genetics include:
Individual Member States need to develop detailed ethical frameworks to guide the conduct of genomic research and its medical application in their own unique social, cultural, economic and religious context. The co-ordination of ethical guidelines should take place based on internationally agreed upon fundamental principals. Capacity building in middle to low income countries can take place and should be encouraged by virtue of information exchange and knowledge transfer between the high and low-income countries.Capacity building will also include the development of human resources infrastructure and access to accurate information on advances in genomics.
The Member States must also establish regulatory frameworks to monitor and control the commercial and medical application of genomics research, which present a number of potential risks and hazards to public safety and the environment.
The ethical and social issues raised by genomics research requires open and comprehensive international debate to sift out the underlying commonalties and the concerns. Tapping on this debate, Member States are encouraged develop collaborative approaches for capacity building in this field .
WHO can play an important role in the planning of ethical frameworks for individual Member States to disseminate the major principles upon which programmes of bioethics suited to local needs should evolve. Support to international and national training programmes in bioethics should also lie within WHOs area of involvement.
In its leadership role as an international public health organization, WHO must ensure that the interest of all countries are addressed in debate around genomics and related ethical concerns. Although many national bodies have made substantial progress in the consideration of ethical implications of genetic advances some ethical questions still remained unanswered such as the ethical implications of research involving human embryonic stem cells.
These recommendations have been incorporated into the work plans of the human genetics programme (HGN) with the aim of guiding Member States with direction setting and policy making in the area of human genomics. Products like the ELSI regulatory model, the ELSI global survey as well as the ELSI global network have been successfully planned and completed in light of the common areas of concern and the need for information exchange and development of networks on genomics. The establishment of this Genomic Resource Centre was also inspired by the same.
- Genomics and World Health Report (2002)
- More information on the Advisory Committee on Health Research
Genomics and World Health, WHO, 2002.