The lengthy process of applying for a licence to carry out PGD (preimplantation genetic diagnosis ) in the UK is set to get slightly easier - at least for some diseases. PGD was first used in 1989, to select a female embryo that would be free from the severe inherited, sex-linked disorder Duchenne muscular dystrophy. Many clinics around the world now use the technique to help couples have children free from genetic conditions, with eight in the UK licensed to carry out the procedure. Despite its routine use, all these UK clinics must apply for permission to carry out PGD from the Human Fertilisation and Embryology Authority (HFEA), on an individual, case-by-case basis. However, the HFEA has now said that licences to carry out PGD tests for diseases that are already being carried out elsewhere in the UK will be 'fast-tracked'.
This change, although a welcome one, still leaves the UK regulation of PGD in a tangle of time-consuming bureaucracy, according to many of its practitioners. For each new disorder that a clinic wants to test for, it must make a separate application to the HFEA to vary its licence. This must include details of the genetic condition to be tested for, laboratory protocols to be used and details of how they were developed. It can take 3-12 months to prepare such an application, which, some clinicians say, can then take up to six months to be considered by the HFEA.
So couples who want to use the technique can end up waiting up to 18 months before they can even begin the lengthy, stressful process of the treatment itself. But, for procedures involving IVF, time is one thing that many patients do not have, particularly women over 37. This degree of regulation is unique, when compared to routine procedures being carried out in other areas of medicine. In particular, it is much more tightly regulated than prenatal diagnosis (PND), which may result in the termination of a fetus. Practically all the diseases tested for using PGD have long been tested for using PND, without the same accompanying paperwork for every individual treated.
One specific example of the excessive red tape involved in carrying out PGD is the fact that clinics must seek individual licences every time they want to look at a particular chromosome translocation - a type of genetic error in which a piece of one chromosome either becomes attached to another chromosome, or swaps places with part of another. The variety of different chromosome translocations are countless, but the techniques for looking at them are all the same. Where a clinic has successfully carried out PGD to look at one type of translocation, they will surely be capable of looking at another.
Part of the reason that PGD is so strictly controlled is the fear that it would otherwise be used for 'trivial' non-medical reasons by many parents. But even though the technique has now been available for 15 years, there has been no evidence of a great demand for 'designer babies' chosen for their physical appearance. Instead, patients who are seeking vital medical treatment are faced with extra delays to an already long, complicated procedure.
Last week's decision to streamline the PGD licensing process for diseases already being tested for did not attract a huge amount of media coverage, and triggered no debate over 'slippery slopes' leading to people picking and choosing characteristics of their future children. This shows that perhaps people are not as worried about PGD as some scare-mongering commentators have previously suggested. With the ongoing and forthcoming reviews of the 1990 Human Fertilisation and Embryology Act, it is time to rethink the way PGD is regulated, so that the people who need to use this technology can do so with ease and speed.
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