BENJAMIN ANGEL was eight days old when his parents were told he had cystic fibrosis. Now, aged 21, he is a third- year medical student at Cambridge University playing first team tennis and badminton for his college.
Mr Angel describes himself as "very lucky". He was diagnosed early. The disease could be managed. And his symptoms are treated, as long as he stays committed to spending two hours a day with a physiotherapist for the rest of his life, and to taking antibiotics constantly.
But Mr Angel is not cured. On that front, the only hope for him and thousands like him, is gene therapy.
Tomorrow, the Human Genetics Commission - the main advisory body to the Government on human genetics - will launch the first ever public consultation into the use of the controversial science to set up genetic databases and treat hereditary diseases.
Its findings will be reported to ministers in February. And for people like Mr Angel, they could be life-changing - a crucial step in persuading a reluctant public to accept genetic research and its applications. It is expected to recommend a framework of safeguards designed to prevent abuse of the new technology.
The genetic research could be far-reaching. It could lead to every person in Britain being tested to reveal genetic defects in an investigation that could even pinpoint where illnesses might occur. Ultimately, those illnesses might be cured by the use of gene therapy. A disease like cystic fibrosis could be overcome by the introduction of correct copies of the deficient genes into the body, and gene therapy could also benefit people suffering from strokes, diabetes, Parkinson's disease or a damaged liver.
But the research methods are controversial. And debate is raging about who should have access to a person's genetic information and what protection should be put in place to ensure people are not discriminated against or exploited by employers or insurance firms.
Already there are fears, for instance, that an undesirable genetic readout could mean higher premiums, or no insurance at all, for applicants who have taken the test. Information about genetic make-up could also fall into the wrong hands, leading to the data being used for commercial purposes.
The genetic research on which people such as Mr Angel depend is still in its very early stages. "I would imagine it would take around 10 years for an efficient gene therapy, provided research is kept up," he said. But such is the public disquiet over the developments he fears the research may not carry on, thanks to "misinformed" criticism over such things as stem cell research and its depiction by some as "Frankenstein technology" or as "playing God".
"I am absolutely terrified of that," Mr Angel said. "We do have to be aware that these issues are potentially a huge area of research and we should tread carefully. But while the politicians and the churches are causing problems and research is not going ahead as it should do, lives are being lost. People are dying every week. Even if they say they've only slowed things down by six months, in that time people have died all over the world."
He believes that when it comes to treating cystic fibrosis by genetic means, there should be little controversy. …