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Edited by Neil A Holtzmann and Michael S Watson, Baltimore, John Hopkins University Press, 1998, 186 pages, £23.00 (pb)
This volume represents the conclusions of a multidisciplinary task force established by the US National Institutes of Health and Department of Energy working groups on the ethics, legal and social implications of human genome research. It ranges across the provision of genetic testing in the USA by commercial, not-for-profit and publicly funded agencies and it seeks to establish guiding principles and make recommendations for the development of safe and effective tests and their application in ways in which are helpful and that do not compromise the rights of patients and/or their families.
For anyone interested in the development of genetic testing this book is a bit like the telephone directory—logical, comprehensive, laid out in a clear and rational way and ultimately dull. Given that much of the data it presents is drawn from retrospective surveys of existing practice, parts of it are inevitably going to be out of date as well. But this should not undermine the usefulness of the text as a helpful bringing together of sources in one place that covers issues previously discussed elsewhere in a more disjointed fashion. It also provides a useful compilation for those more used to considering issues in the context either of the UK's National Health Service, (NHS) or of health care systems of other European Union member states. Interesting comparisons can be drawn between this book and the reports of, for example, the UK's Advisory Committee on Genetic Testing, or the opinions of the European Group on Ethics in Science and the New Technologies.
Of particular interest is the discussion of the role of biotechnology companies as providers of genetic testing services and of the role of commercial factors in driving what does and does not get developed as a test and to whom it is made available as a result. This is timely, given discussions currently underway in the Department of Health, which aim to predict the likely future need for laboratory testing services in the area of DNA diagnostics for the NHS. It is also salutary for those of us who cling to the rhetoric of a health service that is equitable and needs-based and which respects the hopes of patients with rare conditions as well as those with more common ones. It is salutary too for those who hope that recent advances in the scientific understanding of the contribution of genetics to health and disease will deliver tangible benefit for them and not just a healthy bottom line to the companies which own the technology. It is to be hoped that close reading of the US experience will provide a stimulus to the development in the UK and Europe of quality standards which measure all aspects of service delivery and set those in the context of integrated care pathways which bring together all the stake-holders in a balanced partnership that takes account of the full range of user needs.
All in all a useful publication which is timely and to be welcomed.