Grappling With Next-Generation Ethics

Pioneering discoveries in the world of genomics brings with it the challenge of solving problems we never could have imagined. In the process of discovering a genetic cause for atrial fibrillation (AF)—a rapid, uncontrolled heart rhythm—Utah Genome Project investigator Martin Tristani-Firouzi, M.D., found a large family with 53 members who carry the potentially life-threatening change in DNA. But without knowing the genetic information, carriers, who are often otherwise healthy, may have no reason to suspect they are at-risk. The Educational Resource Development Council is supporting a pioneering UGP initiative to offer them education, genetic counseling and clinical genetic testing.

“With appropriate counseling, carriers have the knowledge and resources to make informed choices and medical management decisions that could be potentially lifesaving,” said project investigator and genetic counselor Lindsay Meyers. The program aims to set the standard for effectively communicating newly discovered genomic information to families.

Carriers May Have No Reason To Suspect They Are At-Risk