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.
this is more than a study in the jurisprudence of regulation and of technology. The book also contains important and instructive essays in medical law (particularly), seeking, as it does, to explicate many of the background debates (for example on consent (pp 72–86) and information rights (pp 87–98), on the (legitimate and illegitimate) purposive interpretation of key texts such as the Human Fertilisation and Embryology Act 1990 and embryonic stem cell research (pp 47–56, 168–184), property in human tissue (pp 61–68) and genetic databases and forensic collections (pp 215–235), each of which is often treated in a more or less superficial way in some of the standard texts and commentaries, where judicial and legislative statements are offered without background context beyond some preferred ethical standpoint. And there are considerations of bioethics generally (pp 32–47, 100–118), patenting and human life forms (187–195), gambling (197–201), nanotechnology (pp 118–125).
New guidelines issued by the UK General Medical Council (GMC) will allow doctors to disclose genetic information to relatives - even when patients object, if there are compelling medical reasons for doing so. The guidance, which comes into effect on 12 October, acknowledges that confidentiality is not always absolute; disclosing information about a genetic link to a disease may protect another individual from serious harm. For example, if a patient is diagnosed with a hereditary form of cancer, a doctor will now be able to inform relatives about the potential risk the genetic link could carry. Awareness of such a genetic risk could prompt investigation for the genetic mutation responsible and regular screening, thereby improving the chance of early detection and long-term prognosis.
My working life consists of thinking, reading, writing and talking about philosophy. The idea of the website is to give information about the work I do and to make available unpublished articles, DVDs, etc. It is also to make available any stuff, previously published but now out of print, which might be worth preserving. When it was suggested that I should have a website, I wasn’t sure what it should be like. It has turned out that each section, as well as giving access to things I have written or videos of lectures or discussions I have been involved in, also has many thoughts, poems, etc by other people. The hope is that, if anyone comes to this site to track down something of mine, they may get interested in some of the other things collected under the same topic. I doubt if anyone would want to look through everything on the website. It is meant to be a changing online anthology for dipping into.
The Neuromedia Corner aims to share news and stimulate an effective dialogue about the state of the art of neuroscience technologies, their risks and benefits and the associated ethical and social issues. The Neuromedia Corner is an idea of the bid - Brains in Dialogue project.
The Forum's Bright Ideas programme provides an exciting opportunity for individuals to spend a period of time - anything between a few days and two months - in residence at the Forum. With comfortable, modern offices on Edinburgh's Royal Mile, we offer our visitors time and space to undertake a programme of work tailored to their own interests that can also contribute to in some way to the Forum's aims and objectives. The scheme is open to anyone concerned with the social dimensions of genetics, genomics and the new life sciences, whether natural or medical scientists, medical practitioners, social scientists, artists, writers and musicians, policy makers and others working in public service and civil society, and individuals from the worlds of industry and commerce. Financial assistance is available for travel, accommodation and subsistence.
The treatment of inherited mitochondrial abnormalities in human embryos using donor mitochondria is an advancing area of research. The techniques involved could have profound implications for future generations. This project will explore the ethical issues relevant to affected families, potential donors, researchers, medical professionals and others trying to understand and respond to the therapeutic possibility of mitochondrial transfer.
Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non-binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental rights will need to focus on more interactions with society in order to ensure biobanks' sustainability. International regulation is more oriented on ethical principles and traces the limits of the uses of genetics, while European regulation is more concerned with the protection of fundamental rights and the elaboration of standards for biobanks' quality assurance. But is this protection adequate and sufficient? Do we need to move from the biomedical research analogy to new forms of legal protection, and governance systems which involve citizen