Health Affairs, 22, no. 5 (2003): 166-171 doi: 10.1377/hlthaff.22.5.166 © 2003 by Project HOPE	New Online   How Would Obama, McCain Cover The Uninsured?   Debating Cost Of Uninsured   Try Medicare-For-All   HA Blog Top 10

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Narrative Matters

Learning Genetics

PREFACE: The promise that genetics holds for improving the diagnosis, prevention, and treatment of disease is staggering if not yet fully realized. Such hopes are based on the successful mapping of the human genome and discovery of the genes that mark us for particular maladies—developments that someday could lead to cures for diseases such as cancer, Alzheimer’s, or diabetes. With this new knowledge and the technology to apply it, however, come questions about what we do with what we know. A host of moral, ethical, and legal uncertainties, at both the policy and personal levels, surrounds the use of genetic technologies. After Sharon Terry discovered that her children had a rare genetic disease, she and her husband took a crash course in genetics, founding an organization whose aim is to accelerate research on their children’s condition. Her story reveals the power that proactive parents can wield in expediting research while protecting the privacy of affected families. For all of its potential to cure disease, however, genetic technology also equips us with painful knowledge. Writer Lisa Sweetingham tells us about a couple facing agonizing decisions because of what genetic testing could reveal about their unborn baby’s health.

In 1994 we didn’t know a gene from a hubcap. We thought we didn’t need to know. The brave new world of genetics was vaguely interesting but not part of our world—not until our children were diagnosed with a rare genetic condition and we were thrown headlong into a chasm. The chasm was really a threshold. We crossed it, abandoning our ignorance of medical research and clinical treatments for the other side—a desperate need for those systems to perform exceptionally well. The leap across that threshold took seconds, but learning the realities of these systems was an arduous, eye-opening journey . . . [Full Text of this Article]

Distrusting The System

 

Taking The Reins

 

Getting Researchers On The Same Page

 

Consumers As Catalysts

 

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