When gene technology was tentatively given its first human applications in the 1980’s, the hope was great it would create a new medicine bringing together gene therapy and predictive medicine through the use of genetic testing.
However during this early time, gene therapy appeared to be more risky than successful and genetic testing proved to be greatly ambiguous because it offered tests without treatment and provided outside the health area private information that could be widely used for different purposes, legitimate or not.
The achievement of the sequencing of the human genome in 2000 with its potentialities enhancing new applications for genetic testing has therefore worked as a whistleblower to prepare, at the same level – I mean internationally – an ethical and legal framework that would give the practice of those tests a proper guidance.
The text of the International Declaration on Human Genetics Data adopted by UNESCO in 2003 can be regarded as an operative instrument to guide the practice of genetic and other derived data. In general, it provides clear but not too detailed rules and leaves some flexibility to domestic regulations to enforce them. It will also serve as pedagogical guidelines for professional rules but also as a reference for individuals or groups – although rights are merely recognised to individuals – to claim better information or protection regarding their own genetic data…