Tonight, Dateline NBC will finally air Stone Phillips' report on Jesse Gelsinger, an 18-year-old who was killed in a 1999 gene testing experiment, after keeping the story on file for over a year.
Gelsinger had an enzyme disorder that was not, in his case, fatal. Still, officials at Penn's Institute for Human Gene Therapy hoped to find a cure for the disease by conducting human trials.
Gelsinger participated in an IHGT experiment testing whether a genetically-altered virus could safely stimulate enzyme production in the liver. In an effort to contribute to medical research, he was injected with this virus. Four days later, he died of organ failure.
"It's a heartbreaking personal story about a family and a father's search for answers," Dateline producer Steve Eckert said.
The story was completed and scheduled to air a year ago, but the attacks on Sept. 11 preempted the coverage, according to Eckert. The story was rescheduled to air in May, but was again preempted for what Eckert called "breaking news."
Paul Gelsinger, Jesse's father, said he believes there were different reasons for the delay.
"I think they were waiting for things to resolve," he said. "For a while it looked like changes would be made in the FDA and two laws were introduced in Congress" in the time following the Penn trial.
Eckert said he thinks this is an appropriate time to air the story -- Tuesday marked the third anniversary of Jesse Gelsinger's death.
"The story is about one family's experience leading up to the experiment, the tragedy of the death itself and the father's quest for answers," Eckert said.
Since Jesse Gelsinger's death, Paul Gelsinger has been an outspoken advocate, lobbying for stricter regulations for medical experimentation.
"For a number of months immediately following Jesse's death, Paul was loyal and supported the doctors at the University," Eckert said.
"But, as [he read] federal documents and learned more, Paul discovered that the University had misled him," he added.
Dateline invited Penn officials to be interviewed on the program, but they declined.
"We felt that we were able to respond sufficiently via our press statement," University of Pennsylvania Health System spokeswoman Rebecca Harmon said.
"We really worked to describe the significant effort we've made in the last year to develop a strong and efficient infrastructure to monitor [patient's] safety," she said of the statement.
Paul Gelsinger said he is pleased that NBC has finally chosen to air the story.
"I'm all for it -- exposure is necessary in order for the system to change."
Harmon has a different view, though. "It's not surprising that Dateline has developed the piece, although the circumstance surrounding Jesse's death were covered extensively in the press three years ago," she said.
The Jesse Gelsinger story will air at 9 p.m. tonight on NBC.
