US disquiet over death of teenager in gene therapy
Saturday 11 December 1999
Jesse, who suffered from a chronic liver condition, died in September, four days after being injected with a virus designed to carry the gene into his body. Researchers hoped that this would cure him permanently. Instead, he developed a high temperature, breathing difficulties and other complications that proved fatal.
Jesse was a volunteer in the programme, which was based at one of the most respected medical research centres in the US, at the University of Pennsylvania in Philadelphia. Taking part in experimental programmes at teaching hospitals is one way that people who are chronically ill, and so uninsurable in the US system of private health-care, can obtain state of the art treatment.
At the time, Jesse Gelsinger's death was not directly attributed to the gene treatment. It was only late last month that a report established that it probably killed him. It transpired that as many as three people may have died as a result of experimental gene therapy in the US, but Jesse Gelsinger's is the first case to be documented.
Gene therapy, which is still at a very early experimental stage, holds out the prospect of curing genetically transmitted diseases if the faulty gene can be corrected or replaced. Experiments on rats had produced hopeful results, and the University of Pennsylvania obtained funding for human treatment.
With the stakes so high, this week's conference at the National Institutes of Health uncovered depths of passion that were exceptional in the normally cool and collected world of medical science.
Several of the researchers, including the head of the programme, James Wilson, apologised for breaches of the regulations, while parents of sick children begged for the experiments to be allowed to continue. However, participants also heard revelations about the University of Pennsylvania programme that cast serious doubt both on its effectivenessand reliability.
Officials from the US Food and Drug Administration, which oversees the introduction of new drug treatments, said that they had not been told of deaths among monkeys more than a year before Jesse Gelsinger died. The university researchers for their part admitted that they had accepted Jesse even though he did not strictly qualify under FDA regulations.
The FDA is expected to respond by announcing a new study to consider how the regulations can be tightened to reduce the risks to patient.
- 1 Al Pacino on suffering from depression: 'It can last and it's terrifying'
- 2 Half of young women unable to ‘locate vagina’ and 65% find it difficult to say the word
- 3 Saudis risk new Muslim division with proposal to move Mohamed’s tomb
- 4 A teacher speaks out: 'I'm effectively being forced out of a career that I wanted to love'
- 5 Mexican woman becomes world’s 'oldest person' at 127
Perez Hilton apologises for Jennifer Lawrence naked photo leak
Victoria Justice on naked photo leak: 'Let me nip this in the bud right now'
4Chan 'nude photo hacker' claims there are hundreds more celebrity images to be published
Saudis risk new Muslim division with proposal to move Mohamed’s tomb
Ariana Grande nude photos leak: 'These are completely fake' say singer's representatives
Rotherham child sex abuse scandal: Labour Home Office to be probed over what Tony Blair's government knew - and when
What do immigrants really think of Britain? Polish immigrant's Reddit post goes viral
Ashya King: Parents of five-year-old boy refused permission to visit him in hospital and denied bail at Spanish court
With Douglas Carswell joining Ukip, my party has taken another giant step forward
When elitism grips the top of British society to this extent, there is only one answer: abolish private schools
Ashya King: 'Cruel NHS has not given us the treatment we need', says father of five-year-old with brain tumour who fled to Spain
£40000 - £50000 per annum + benefits+bonus+package: Harrington Starr: SQL Impl...
£45000 - £55000 per annum + Benefits + Bonus: Harrington Starr: SQL Technical ...
£85000 per annum: Harrington Starr: Head of IT (Windows, Server, VMware, SAN, ...
£55000 - £60000 per annum + Benefits + Bonus: Harrington Starr: Lead C# Develo...