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PETBioNewsCommentWho cares about the Human Genome Project?

BioNews

Who cares about the Human Genome Project?

Published 18 June 2009 posted in Comment and appears in BioNews 54

Author

Dr Jess Buxton

Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the output from a DNA sequencing machine.
CC BY 4.0
Image by Peter Artymiuk via the Wellcome Collection. Depicts the shadow of a DNA double helix, on a background that shows the fluorescent banding of the sequencing output from an automated DNA sequencing machine.

The Human Genome Project is nearly finished and will soon change all our lives overnight. Or so you might think, given the regular media coverage biology's biggest project receives. Last week, the reports were of biotech firm Celera Genomics, lambasted by their public sector rivals for claiming they had 'nearly...

The Human Genome Project is nearly finished and will soon change all our lives overnight. Or so you might think, given the regular media coverage biology's biggest project receives. Last week, the reports were of biotech firm Celera Genomics, lambasted by their public sector rivals for claiming they had 'nearly finished' the mammoth undertaking.

The ongoing slanging match between the public and private sides has kept the project firmly in the public eye. The continuing hype may well have given everyone the impression that we already know practically all there is to know about human genetics. But we don't. Even once an accurate version of the human genome is truly complete (probably in 2003), it will be decades before we understand what each gene (and its many variations) does, how they interact with each other, and how they interact with a myriad of non-genetic factors.


However, the project could - eventually - result in the earlier diagnosis and better treatment of many illnesses, and a possible end to adverse drug reactions. All this will require big changes in health service provision, not to mention massive investment. But worryingly, for the thousands of people in the UK affected by a serious genetic condition caused by a change in a single, known gene, the current genetics service is not always able to meet even their needs.


This should, of course, be a pressing matter for the recently-formed Human Genetics Commission, which held its first open meeting last Monday. And indeed it was listed in their consultation document as a possible priority. But it is fighting for attention with issues such as the ethical concerns surrounding national medical databases, genetic discrimination by employers and insurance companies, and the consequences of possible future tests for non-medical traits such as athletic ability.


Horizon-scanning is undoubtedly an important part of the Commission's work, and it is of course vital they consider the ethical, legal and social considerations of possible future technologies. But not at the expense of improving the lot of those who stand to benefit from the knowledge we have right now. A primary ethical requirement of service development is that people can already access existing services.


The Commission has drawn its members from the legal, medical and religious worlds - but not from any genetic condition support group. Of course, a lone voice cannot represent the views of any diverse community, but it may help bring experts pondering the future back to present reality. Otherwise, there may be a danger that 'Human Genome Hype' and the accompanying media scare stories may push less sensational concerns from the agenda.

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