Eyes on the Prize: Truth Telling About Genetic Testing

Excerpt

Individuals and families affected by genetic conditions, numbering in the millions all over the globe, suffer a great deal. While many do not yet label themselves as affected, we all carry dozens of deleterious mutations, many of which contribute to the myriad of common conditions from which we suffer. Although the human genome sequence was finished in 2000— seven years before this Summit—we are not at a point of regular translation of basic science to improved human health. We must accelerate the pace of translation. To do this, we must understand the bottlenecks, discover the communication disconnects, and pave the way to increased collaboration leading to the discovery that is within our reach.

Genetic Alliance convened this Summit as ‘open space’; a place where all stakeholders could come and freely offer their concerns, opinions, and resources. We sought a safe place for truth telling, and we are grateful for the many stakeholders who rose to the occasion.