Govt for biobanks to store genes

‘‘The experts have to analyse the consequence of allowing genetic mapping of the entire population. All the pros and cons like legalities, ethics and fear of misuse is being considered,’’ said a member of the committee. The need of setting up the banks arose as researchers had expressed the increasing need to obtain patient material for meaningful clinical and medical studies in the investigation of complex disease mechanisms. Countries like Iceland, Estonia and Great Britain already have biobanks. ‘‘When you have the genetic information, you can find if there is actually predisposition of disease. It can be used by the person as well as the governments,’’ said the expert.

Tissue samples, blood and DNA-libraries are used for research and the development of medical diagnosis and therapy. The results are saved for a longer time. Biobanks guarantee the possibility to store vast amounts of patient material, available anytime as standardised, comparable probes and data registration.

There is however an ethical side to it. ‘‘There are issues of industrial research and the commercial utilisation of its results throw up questions like ‘who does the information belong to?’ Can it be misused?’’ the expert added.

The panel of experts will be probing issues like accessibility of the information and exploitation of the victims. ‘‘Incase the committee feels there is a need for the biobanks, ethics and guidelines governing them would be formed by the same panel,’’ the experts said.

According to the experts, if passed the donor will be asked to give a ‘general consent’ in its structure: the donor gives his permission for all possible present and future examination methods on his tissues and DNA. ‘‘The fear, that more information about lifestyle, intelligence and other factors will be seized along with the collection of genetic data, is without reason,’’ said the expert.

In order to avoid a misuse of genetic and clinical data, for example to interested third parties like employers and health insurance companies, some countries have made the information anonymous. Experts say, a way out of this dilemma may be the ‘‘Statement of Benefit-Sharing’’ (2000) of the Human Genome Organisation or the International Ethic Commission of the UNESCO (2001), which presents several guidelines for the collection and use of genetic data in their report.