This edition has been revised and updated and includes landmark cases such as Terri Schiavo and Jesse Gelsinger
. It has a new chapter on the latest social and political issues in American health care (replacing the chapter on managed care) and discussion of new topics such as partial-birth abortion law, organ donation after cardiac death, new developments in artificial hearts, stem cell research, clinical trials developed by companies to market new drugs, infant euthanasia in the Netherlands, recent Vatican statements on feeding tubes, ghostwritten articles in medical journals, and controversial AIDS research in Africa.
Naam is referring to the case of Jesse Gelsinger
, an 18-year-old suffering from an inherited liver disorder who died in 1999 when an experimental genetic treatment by University of Pennsylvania researchers caused a traumatic immune reaction.
Arguably, Jesse Gelsinger
was motivated by genuine altruism: according to his father, he joined a clinical research study to help save babies who shared his genetic disorder.
The death of Jesse Gelsinger
during his participation in human subject research provides an example of how civil liability and institutional sanctions fail to send equivalent messages of blameworthiness and moral culpability as criminal sanctions.
In 2005, researcher James Wilson and the University of Pennsylvania (UPENN) were found complicit in the case of Jesse Gelsinger
, a teenage volunteer who died in a gene therapy trial.
Early days of what he called hyped expectations were followed by horror at the death in 1999 of 18-year-old Jesse Gelsinger
, who volunteered to participate in a Penn clinical trial of gene therapy for a rare genetic liver disease.
The book begins with a powerful and heartbreaking account of the Jesse Gelsinger
tragedy, written with balance and reserve by Jesse's father, Paul.
The most recent candidate for notoriety took place in 1999 at the University of Pennsylvania, where the 18-year-old Jesse Gelsinger
died in a gene-therapy study.
(Korn, 2000) The unfortunate death of gene-therapy subject, Jesse Gelsinger
, has led to concerns about the adequacy of his informed consent and the urgency to find a cure for his disease.
Since the tragic death of Jesse Gelsinger
, a healthy teenager who participated in a gene therapy trial and died in 1999, it is the issue of human participant protection which has gotten the most attention.
Milstein also represented the father of Jesse Gelsinger
, an 18-year-old University of Pennsylvania student who volunteered to take part in a gene therapy trial aimed at finding a treatment for ornithine transcarbamylase deficiency, a metabolic disorder.