Bartha Maria Knoppers

In the 20 years following the launching of the Human Genome Project, socio-ethical and legal responses to the policy issues raised have varied across jurisdictions. There seems, however, to be a move away from the more static, classical responses that characterized the first decade to a more epigenetic and complex one. The latter policy approach better reflects the dynamic nature of the science itself.

Advances in human genomics are ushering in a new era of predictive, preventative and personalized approaches to medicine. However, as the integration of genomic medicine progresses, the health community has a responsibility to communicate to the public the risks and challenges of genetic information. A possible knowledge transfer framework is outlined as a means to bridge the practical uses of genetics within various ethical, social and economic contexts. Tools and resources are needed to help clinicians understand genetic risks and help them inform the public appropriately and effectively.

“Global public goods favor the mechanism of public information resources and free and open communication therein. Global public goods once produced should benefit all. Like a clean environment, knowledge about human health has no one institutional home. Like the gene pool at the level of the

Lessons learned from the arena of other genetic ‘resources’ (such as plants and animals) together with the past decade of experience in human genetic research requires a rethinking of policy approaches. Whether at the level of whole populations, the family or the individual, the determination of rights and responsibilities is necessarily situated in the context of relationships. From an appreciation of these relationships emerge ethical principles that reflect the complexity of both the human person and new technologies. The elaboration of principles such as individuality, mutuality, reciprocity, solidarity, equity, citizenry and universality foster the possibility that traditional human rights and bioethic principles can be interpreted in a new way so as to promote and protect human well-being.