Genetic tests for which the results are likely to have a big impact on the person being tested should be provided to the public only within the framework of a consultation with a medical practitioner, recommend draft principles for direct to consumer genetic tests. The number of genetic tests available on the open market has increased in the past few years and will continue to grow as the technology develops. The Human Genetics Commission, the UK government’s advisory body on developments in human genetics, set up a working group with expertise in regulation, clinical, and molecular genetics and genetic counselling. The group includes representatives from the genetic testing industry and will develop a framework of "high level principles" to promote consistency in the provision of direct to consumer genetic tests at an international level.
Predictive testing for Huntington’s disease was introduced in the late 1980s. It was offered reluctantly, however, because of the lack of treatment available for identified gene carriers and the potential for genetic discrimination—that is, the unfair and inappropriate treatment of a person or group on the basis of genetic information. In the linked cross sectional survey (doi:10.1136/bmj.b2175), Bombard and colleagues assess the nature and prevalence of genetic discrimination in a cohort of asymptomatic genetically tested and untested people at risk for Huntington’s disease.
FERTILITY regulators have triggered a new row over designer babies by allowing doctors to destroy embryos affected by more than 100 genetic conditions, including many illnesses that are not life-threatening. The genetic “defects” that can now be routinely screened out include conditions carried by a number of leading figures, such as Pete Sampras, the tennis champion, and Sergei Rachmaninoff, the Russian concert pianist and composer. In some cases it will mean the elimination of an embryo that has been identified as carrying genetic material inherited from a stricken grandparent, but which may not necessarily develop the same illness. The Human Fertilisation and Embryology Authority (HFEA), has published a list of 116 inherited conditions that fertility clinics can screen out without requiring special permission.
The article in the Sunday Times last week ‘Embryos destroyed for minor disorders’ was inaccurate and misleading and could cause confusion and distress for those families undergoing or considering IVF treatment with pre-implantation genetic diagnosis (PGD). PGD is licensed only for serious medical conditions which severely threaten the future health and wellbeing of children. It is not a ‘routine’ procedure. In 2007, out of nearly 37,000 patients who received fertility treatment, 169 had PGD, fewer than one in 200. Embryos are tested when they are just three days old and made up of about eight cells. They are not at the developed stage of the foetus as shown in the photograph.Finally, to suggest that embryos are destroyed for ‘minor conditions’ which would require ‘unpleasant treatment’ is not only misleading, it is disrespectful both to those living with the condition, and those seeking to avoid passing on these serious conditions to their children.
Newspaper stories claiming that fertility regulators in the UK have allowed embryos to be destroyed for 'minor disorders' are unrelated to decisions taken at a recent regulatory meeting. Stories last week said the Human Fertilisation and Embryology Authority (HFEA) had allowed doctors to routinely screen out more than 100 genetic disorders using PGD (preimplantation genetic diagnosis). But, according to HFEA sources, the list of genetic disorders approved for PGD has been on the website for at least three years.