Last updated: March 18, 2013
Transcript of ELSI Multimedia Video
The scientists who launched the Human Genome Project believed in the power of genetic information to transform health care to allow earlier diagnosis of diseases than ever before possible and to fuel the creation of powerful new medicines.
But it was also clear that genetic information could potentially be used in ways that are hurtful or unfair - for example denying health insurance because of an increased risk for developing a particular disease.
Aware of the danger and hoping to ward it off, the founders of the Human Genome Project created a program to explore the Ethical, Legal, and Social Implications of new genetic knowledge. The goal was to anticipate problems that might arise and to prompt solutions.
For example, in the future, doctors will likely be able to give each of us a "genetic report card" that will spell out our risk of developing a variety of different diseases. But will we really want that information? How will it be used? Who will have access our genetic information? How will it affect our lives, our families, and our communities?
The challenge of addressing these issues is not reserved for scientists. We all have a stake in making sure that everyone will benefit from genetic research and no one is harmed.