Rich Databases and Poor People: Opportunities for Developing Countries
Bhardwaj, Minakshi, Trames
Technology has been at the heart of human progress since earliest times. There are different perceptions of technology, some people view technology as a reward of development and some people consider technology as a tool for human development. In medicine it serves both; with information technology impinging every aspect of medicine. The increased reliance of medical research on genomics and its interdependence on information technology has given rise to bio-informatics which helps us to understand the complex structures at molecular level, and also holds structures and information about genomes in databases. The implications of genetics research is fundamentally the same and all human beings share same intrinsic value but the world is divided into developing and developed countries based on socio-economic patterns, literacy, legal procedures and also technological developments which are interlinked with these factors. Using genetic databases has its own implications for developing countries and raises many ethical concerns. At the level of each human being, whether in developing or developed countries, the ethical principles may not change but the availability of resources and the governing structures of countries challenge application of universal ethical principles and balancing ideals.
Genomics is still considered a fruit of developed countries, although there are some notable exceptions of bigger developing countries like Brazil, India, China, Cuba that have made significant progress in genomics. Genetic databases are "adds-on" in genomics research and have their own implications and importance to developing countries. They provide opportunities and threats to developing countries and raise dimensions that diversify the ethics of genomics at global level. They have called for redressing the gap between developed and developing countries and challenge us with new horizons in genomics debate. Whether there is a need for creating large-scale genetic databases, their implications on health care, issues of economics and public understanding of genes and genetic technologies are important concerns especially in the context of developing countries given the access to healthcare and awareness about possible alternatives in medicine is limited because of illiteracy and poverty. In this paper I want to consider an overview of broader ethical issues involved in establishing genetic databases, issues of governance and some cultural factors that play an important role in decision-making. Let us first consider some accepted definitions for genetic databases and different kinds of existing genetic databases at international and country level.
2. Genetic databases
Genetic databases are of various kinds and today most of them rely on computational tools. WHO describes genetic databases as "any methodical or systematic collection of data, structured in a fashion that allows accessibility to individually or collective elements of that database by electronic, manual or other means" (WHO 2001). Databases of genomes of many diseases causing micro-organisms other organisms including plants for biological and environmental studies and human beings have been created for research and therapeutic purposes. The HUGO ethics committee in its Statement on Human Genetic Databases adopted the definition "a genomic database is a collection of data arranged in a systematic way so as to be searchable. Genome data can include inter alia sequences, mutations, alleles, polymorphic haplotypes, SNPs and polymorphisms. The work associated with a database includes collecting, curating, storing, validating and preparing specific sets for transmission" (HUGO 2002). There are also bibliographic databases carrying information on the relevant studies done on human genome and large-scale population biobanks for long- term studies. This information is utilised for research in medicine and biology for healthcare and environmental purposes. …