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The Human Genetics Commission (HGC) and the UK National Screening Committee (NSC) have rejected a proposed national scheme to collect a DNA profile of every baby at birth, the BBC has reported. The Joint Working Group, formed by members from both organisations, concluded that while genetic profiling might provide clinical benefits in the future, at the moment the scientific evidence is limited. They recommend that the government revisit the issue in five years. The group had been tasked, as part of the Genetics White Paper, to consider the positive and negative aspects of the genetic profiling of babies at birth. Their report, Profiling the newborn: a prospective genetic technology?, has now been published.

Profiling was defined as, “…the analysis of a person’s entire genome in order to reveal the majority of the genetic variations.” The Working Group concluded that given the current state of scientific and medical knowledge that it was not practicable for this scheme to go forward at this time. The report states that, “…this is not likely to be affordable in the public health context in less than 20 years. It also raises a number of important ethical, legal and social issues which need to be addressed before any such scheme could be acceptable.” For example, there is a concern that information that came from the profile could be used in the future to discriminate against individuals in the areas of employment, insurance and education. The police might also use the information “…for unwarranted purposes.” If such a profile were to be collected from newborns, the information it contained would need to be adequately protected from misuse.

In the meantime, they believe that regulation might be needed in the commercial sector. Genetic profiling is feasible and companies are already offering it on an individual basis, raising issues such as the provision of genetic risk information to children. The Working Group does see the potential for genetic profiling to be of clinical use in the future but calls for further research into its implications. Research is also needed into genetic testing in children and into public attitudes on this issue. The results of such research would give reviewers a better understanding of the implications of genetic profiling when it is next considered. - 2/4/05 Dr Susan Wallace