Blog | Ethics and Genetics

08 Dec

Privacy, the CRPD and the Commercialisation of Personal Medical and Genomic Information

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Written by Edward Hockings
DISQUS_COMMENTS

Medicine and healthcare appear to be in the midst of previously unimaginable changes. These changes might result in an improvement in our understanding of the nature of disease and, in time, assist us in predicting how a patient might respond to treatment. However, the fact remains, sweeping changes have been made to the way medical information is shared and accessed, and the cornerstones of medical law are being eroded for a science still in its infancy. The coming together of genomics, genetics and society in entirely novel ways, brings with it risks that are difficult to quantify, and must be the object of open and sustained public discussion. Genetics, genomics and advanced biotechnology are not business as usual. The public must therefore be given a central role in decision making when it comes to big decisions in these areas. A national genetic database and the commercialisation of our genomic data…

19 Aug

Moratorium on Insurers' use of Genetic Tests

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Written by Edward Hockings
DISQUS_COMMENTS

The Moratorium on insurers’ use of predictive tests was recently extended. The UK Government has launched a consultation on how it is working in practice. The Moratorium is exclusively concerned with tests used to predict future illness. While EthicsandGenetics applauds these developments - as the Concordat is merely an agreement - the question remains: how long will it last for, and most importantly, the Government will eventually have to regulate this new terrain by way of legislation; when we arrive at this point, what kind of legislative measures can we expect? Can we assume that future legislation will broadly reflect the current Concordat? Let us firstly consider its substance. In brief: The Association of British Insurers (ABI) and the Government have agreed to the following measures: A. To abide by a policy framework that ensures that insurers’ use of genetic information is transparent, fair and subject to regular reviews. B.…

12 Jun

A centralised genomic database and the risks it carries for privacy

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Written by Edward Hockings
DISQUS_COMMENTS

In a recently published report for the Government, the Human Genomics Strategy Group called for the development of a national central genomic data storage facility. This would mean that genetic data collected from the population will be linked to electronic medical records. ‘Connecting for Health’ was rolled-out on opt-out basis – can we expect the same with a national genetic database? In response to a Freedom of Information request by EthicsandGenetics, Danny Lamond, Ministerial Correspondence and Public Enquiries for the Department of Health confirmed that a “central repository for storing genomic and genetic data and relevant phenotypic data from patients” will be set-up. Lamond goes on to say that “The report (by the Human Genomics Strategy Group) has been welcomed by the Secretary of State for Health and the Minister for Universities and Science, who have asked for the recommendations to be implemented through a shared strategic framework.” While this…

11 Apr

Privacy, the database state and the genomic era

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Written by Edward Hockings
DISQUS_COMMENTS

In anticipation of a supposed shift in healthcare based upon genetics, New Labour, under the direction of the UK pharmaceutical sector, set about implementing a considerable legislative programme in order to gain a competitive edge in the global market for personalised medicine. This new model of healthcare requires access to massive data sets, and thus, the NHS National IT Programme, which included, ‘Connecting for Health’ – a national, set of interconnected databases, containing electronic medical records – was set up. Moreover, the Secondary Uses Service, a mechanism by which personal medical information can be shared and accessed, and makes patient-identifiable data available without individual consent, was also introduced. Lastly, Section 251 of the 2006 NHS Act circumvents the common law of confidentiality, Article 8 of the Human Rights Act 1998, as well as the Data Protection Act 1998 – and permits access to personal medical information without the need for…

17 Feb

The merits of 'Personalised genetic tests'

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Written by Edward Hockings
DISQUS_COMMENTS

Medicine and healthcare are in the midst of previously unfathomable changes. It is clear that we are moving towards an era of ‘proactive genomics.’ As the costs of sequencing a human genome fall, more and more private clinics and companies will offer ‘personalised medicine.’ From the standpoint of developing ever more sophisticated methods in healthcare, personalised medicine is an exciting prospect. Thus far, however, it is nowhere near being an unmitigated success. In fact, we are seeing unsubstantiated promises about a science that is still in its infancy. Genomic sequencing enables physicians to identify an individual’s predisposition to disease and potentially predict how a given patient might respond to a particular drug. It may also go some way in eliminating unnecessary treatments and reduce the possibility of adverse reactions to drugs and thus increase the efficacy of treatments. The continual development of new, faster and cheaper DNA sequencing technologies such as…

20 Oct

The Ethics of Enhancement

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Written by Edward Hockings
DISQUS_COMMENTS

“Genetic enhancements will not merely be permissible, but may be morally required. We face the dawn of biological liberation.” These are the words of Julien Savulescu, a philosopher at Oxford, and prominent member of the Oxford Uehiro Centre for Practical Ethics. What are genetic enhancements, why would they be morally required – and what on earth does Savulescu mean by the “dawn of biological liberation?” While genetic enhancements are not currently available for humans, some interesting and rather odd examples of the kind of enhancements that may become available in the future, can be found in GM mice. Genetic enhancements operate on the individuals’ genome, and very roughly, allow changes to be made, new genes to be added, faulty genes to be replaced by functional ones, and better genes in place of unwanted genes. There are two kinds: firstly, germ-line engineering, and then there is somatic gene therapy. The latter…