Picking Nits or Learning Lessons?
By Marcy Darnovsky and Osagie K. Obasogie,
Bioethics Forum
| 09. 17. 2007
Defensiveness on Display in Gene Therapy Death
The full story of 36-year-old Jolee Mohr's recent death in a gene therapy clinical trial for rheumatoid arthritis is still unfolding. The study, sponsored by Seattle-based Targeted Genetics, remains on hold. A team of 20 doctors and scientists at the University of Chicago Medical Center has combed through autopsy samples. The FDA has yet to announce the direct cause of death, and the Recombinant DNA Advisory Committee (RAC) will discuss the case at its September 17 meeting.
There's a lot we don't yet know. But there's a fair amount we do know, and much of it is troubling. Gene therapy's high public profile has led journalists to investigate information released by Mohr's family that raises questions about the study's design, inclusion criteria, and conduct. Some are specific to the Targeted Genetics study while others are broader. Even if no one had died, a number of these issues would still be quite relevant given gene therapy's record to date: inconclusive at best, and certainly disappointing given the high hopes repeated over two decades.
One key concern is whether people whose...
Related Articles
By Priyanka Runwal, Chemical and Engineering News | 08.05.2024
Saritee Sanodiya, 26, has spent countless days wondering if she’ll ever live a “normal” life. Growing up, Sanodiya often missed school, frequenting the hospital for sudden, life-threatening drops in her hemoglobin levels and excruciating pain in her joints. High fever...
It’s been a busy couple of months in biopolitics, with developments in the US, UK, China, Japan, and implicitly on Mars. Time for a brief roundup.
• • •
Bioethics needs an update
The National Research Act is now 50 years old. It was signed into law on July 12, 1974, as a direct response to publicity about the 1932 “Tuskegee Study of Untreated Syphilis in the Negro Male.” The Hastings Bioethics Forum celebrated its anniversary with an...
By Editorial Staff, The Lancet | 07.20.2024
Image by DrKontogianniIVF from Wikimedia Commons
Despite major advances in securing sexual and reproductive rights globally, one aspect is continually neglected: infertility. Evolving gender norms and financial precariousness have led to delayed childbearing, which increases infertility in both males and...
By Julia Black and Margaux MacColl, The Information [cites CGS' Katie Hasson] | 07.19.2024
When venture capitalist Jack Abraham first began dating his wife, Gabriella Massamillo, he insisted on one condition: that when they were ready to have children, she’d be willing to conceive using in vitro fertilization. Abraham had lost both his mother...