US disquiet over death of teenager in gene therapy

A FURORE has broken out in the upper reaches of the American scientific and medical establishment following the death of a young man who was being treated in an experimental gene therapy programme. The circumstances surrounding the death of 18-year-old Jesse Gelsinger were the subject of a tumultuous three-day conference near Washington, which ended yesterday with calls for far tougher regulation of this pioneering sector.

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.

Start your day with The Independent, sign up for daily news emails
PROMOTED VIDEO
Have you tried new the Independent Digital Edition apps?
ebooks
ebooksA special investigation by Andy McSmith
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs General

Tradewind Recruitment: Year 3 Primary Teacher

£100 - £150 per day: Tradewind Recruitment: Year 3 Teacher Birmingham Jan 2015...

Ashdown Group: Lead Web Developer (ASP.NET, C#) - City of London

£45000 - £50000 per annum + Excellent benefits: Ashdown Group: Lead Web Develo...

Tradewind Recruitment: Key Stage 2 Teacher Required in Grays

£21000 - £40000 per annum + Negotiable: Tradewind Recruitment: Key Stage 2 tea...

Recruitment Genius: Software Development Manager

£40000 - £50000 per annum: Recruitment Genius: This is an exciting opportunity...

Day In a Page

Isis hostage crisis: The prisoner swap has only one purpose for the militants - recognition its Islamic State exists and that foreign nations acknowledge its power

Isis hostage crisis

The prisoner swap has only one purpose for the militants - recognition its Islamic State exists and that foreign nations acknowledge its power, says Robert Fisk
Missing salvage expert who found $50m of sunken treasure before disappearing, tracked down at last

The runaway buccaneers and the ship full of gold

Salvage expert Tommy Thompson found sunken treasure worth millions. Then he vanished... until now
Homeless Veterans appeal: ‘If you’re hard on the world you are hard on yourself’

Homeless Veterans appeal: ‘If you’re hard on the world you are hard on yourself’

Maverick artist Grayson Perry backs our campaign
Assisted Dying Bill: I want to be able to decide about my own death - I want to have control of my life

Assisted Dying Bill: 'I want control of my life'

This week the Assisted Dying Bill is debated in the Lords. Virginia Ironside, who has already made plans for her own self-deliverance, argues that it's time we allowed people a humane, compassionate death
Move over, kale - cabbage is the new rising star

Cabbage is king again

Sophie Morris banishes thoughts of soggy school dinners and turns over a new leaf
11 best winter skin treats

Give your moisturiser a helping hand: 11 best winter skin treats

Get an extra boost of nourishment from one of these hard-working products
Paul Scholes column: The more Jose Mourinho attempts to influence match officials, the more they are likely to ignore him

Paul Scholes column

The more Jose Mourinho attempts to influence match officials, the more they are likely to ignore him
Frank Warren column: No cigar, but pots of money: here come the Cubans

Frank Warren's Ringside

No cigar, but pots of money: here come the Cubans
Isis hostage crisis: Militant group stands strong as its numerous enemies fail to find a common plan to defeat it

Isis stands strong as its numerous enemies fail to find a common plan to defeat it

The jihadis are being squeezed militarily and economically, but there is no sign of an implosion, says Patrick Cockburn
Virtual reality thrusts viewers into the frontline of global events - and puts film-goers at the heart of the action

Virtual reality: Seeing is believing

Virtual reality thrusts viewers into the frontline of global events - and puts film-goers at the heart of the action
Homeless Veterans appeal: MP says Coalition ‘not doing enough’

Homeless Veterans appeal

MP says Coalition ‘not doing enough’ to help
Larry David, Steve Coogan and other comedians share stories of depression in new documentary

Comedians share stories of depression

The director of the new documentary, Kevin Pollak, tells Jessica Barrett how he got them to talk
Has The Archers lost the plot with it's spicy storylines?

Has The Archers lost the plot?

A growing number of listeners are voicing their discontent over the rural soap's spicy storylines; so loudly that even the BBC's director-general seems worried, says Simon Kelner
English Heritage adds 14 post-war office buildings to its protected lists

14 office buildings added to protected lists

Christopher Beanland explores the underrated appeal of these palaces of pen-pushing
Human skull discovery in Israel proves humans lived side-by-side with Neanderthals

Human skull discovery in Israel proves humans lived side-by-side with Neanderthals

Scientists unearthed the cranial fragments from Manot Cave in West Galilee