Germany's independent science funding agency, the Deutsche Forschungsgemeinschaft (DFG; German Research Foundation), has given the ethical and legal "green light" for establishing a gene bank in the country.
The recommendations came in a report on predictive genetic diagnostics released last week (September 2) by the DFG's Senate Commission on Genetic Research.
Recommendations from the DFG are not binding, but the organization's reputation means they are considered by politicians and legislators to reflect the position of scientists in general.
Not surprisingly, the commission placed several ethical preconditions on gene banking. First, the collection, storage, and processing of specimens and data must go hand-in-hand with the reliable protection of donors against the misuse of their data, the report's authors write.
Also, donors should consent freely to the processing of their specimens and data, having been informed of the legal provisions applying to data protection and donor privacy, their option to withdraw consent ...
