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Archive for May, 2012|Monthly archive page

Considering Dementia Awareness

In 2012, Capacity on May 28, 2012 at 11:21 am

Just a quick post, unfortunately belatedly, to highlight Dementia Awareness Week 2012 (May 20-26 2012) especially the Alzheimer’s Society’s campaign to ‘remember the person’, accessible here. The ‘faces of dementia awareness’ page highlights the lived experience of a few people with dementia, with Caroline’s story really bringing home the fact that dementia is not an ‘older persons’ condition – her story highlights her experiences of receiving an Alzheimer’s diagnosis when aged 52.

Last week the Huffington Post reported the results of a YouGov survey of over 4000 adults, commissioned by the Alzheimer’s Society and Saga Homecare, had indicated that almost 2/3 of people surveyed were worried about developing dementia. The Chief Exec of the Alz’ Society, Jeremy Hughes, was reported to have said: “There is currently no cure and people aren’t getting the care they deserve. However we know that with the right support people can live well with the condition for a number of years.”

Sadly enough, a recent discussion for a carer known to one of the HEAL team, who is caring for her husband aged 63, diagnosed with a rare form of dementia, bears his comments out only too well. Despite being ‘in the system’ for almost two years there is no support yet in place. She bears the burden of 24/7 care alone, with the only respite coming from family and sometimes friends. This may be a geographic ‘blip’ in the provision of support services, but it is certainly not a one-off scenario.

Unfortunately there remains far too little understanding of dementia, and crucially its impact on both those with a diagnosis and their carers – there is much work to be done to further raise awareness.

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To Think, To Write, To Publish: Workshop

In 2012 on May 28, 2012 at 8:09 am

The Consortium for Science, Policy, and Outcomes (CSPO) at Arizona
State University was recently awarded a generous grant from the
National Science Foundation (NSF) in order to conduct the second
iteration of a first of its kind workshop, “To Think, To Write, To
Publish,” founded on these very ideas.

Writers of all kinds as well as science, innovation and policy
scholars are invited to apply to this competitive program where they
will learn sought after literary techniques and publish their work in
a collection of creative nonfiction essays that makes science,
innovation and policy scholarship accessible to a larger audience
using creative nonfiction techniques.  Completed essays will be
published in various venues including a special book published by an
imprint of the Creative Nonfiction Foundation.

The Workshop is an all expenses paid, two-part event, offering
participants an honorarium upon completion of the program. The first
part of the workshop will take place in Washington, DC in early
October 2012 and the second in Tempe, Arizona, mid-May 2013 (nice
weather is expected!).

The application deadline is June 15, 2012.  More information is
available at:  www.thinkwritepublish.org or http://cspo.org/projects/think-write-publish/.

Publish or Perish

In 2012 on May 23, 2012 at 8:44 am

“Publishing in Bioethics: Intensive Course on Research and Publishing in the field of Bioethics(Leuven, Belgium, 10 -12 October 2012)

The Centre for Biomedical Ethics and Law (of KU Leuven) is organising an intensive course on research and publishing in bioethics and medical humanities. Many researchers are struggling to get their work published. The objective of this course is to provide them and anyone interested in publishing in bioethics and the medical humanities with coherent information and support. The course offers all the necessary practical tools to get well-planned research work published.

The course will combine lectures with practical examples. There will be time for discussions. Participants will be invited to present their own research work in progress. The language of instruction will be English.

The course is of interest to participants from diverse professional backgrounds, such as nursing, medicine, philosophy and theology, health care administration, to PhD students undertaking courses of study in these areas and to more senior researchers. Anyone interested in publishing in bioethics and the medical humanities will benefit from this course. This intensive course is part of the Erasmus Mundus Master of Bioethics programme organised by a consortium of three European universities, namely the KU Leuven (Belgium), Radboud Universiteit Nijmegen (The Netherlands) and the Università degli Studi di Padova (Italy). Because of this combination, participants of the intensive course will join Master students from all over the world.

Detailed information on registration and payment can be found at www.masterbioethics.org under Intensive Courses.

Current Legal Issues: Law and Global Health

In 2012, Meetings on May 21, 2012 at 8:00 am

The UCL Current Legal Issues: Law and Global Health programme for July 2-3, 2012, is now available here, and also with booking details/form, here. For the uninitiated this is the Annual Current Legal Issues Inter-Disciplinary Colloquium at the Faculty of Laws, UCL – these international colloquia have run since 1996 on a variety of topics, overseen by Prof. Michael Freeman.

This year’s colloquium is convened by Prof Freeman together with Dr Sarah Hawkes (UCL Institute of Global Health) and Professor Belinda Bennett (University of Sydney). The keynote speech will be delivered by Prof. James Orbinski (University of Toronto, see further info here). Further info about the speakers is available, as are the abstracts.

There is a bit of a HEAL Law team effort for this colloquium as Hazel and Caroline are giving a paper on ‘Vulnerability as a Legal Concept’, and John Coggon is speaking on  Global Health, Law, and Ethics: Human Interests, Fragmented Sovereignty, and the Limits of Universalism (John is joining us at Southampton later this year), and Jonathan Montgomery is chairing a session on Global Health Law.

 

mtDNA in Manchester: Exploring mitochondrial donation

In 2012, Genetics, Reproduction on May 16, 2012 at 8:23 am

Last week I participated in a fascinating Interdisciplinary Dialogue event around ‘The genetic family in question’ at the Morgan Centre for the Study of Relationships and Personal Life at Manchester University, organised by Dr Petra Nordqvist. This was linked to her project with Prof. Carol Smart on ‘Relative Strangers’ (the subject of last week’s blog post).

Coincidentally, both Dr Rebecca Dimond (Cardiff) and I offered papers on mitochondrial donation, so we were fortunate to have an entire afternoon session dedicated to considering the policy, law, social and other potential implications raised by these developing techniques – these are currently lawful for research purposes only (ie not lawful for use in the treatment of patients), following a licensing decision by the HFEA in 2005. Rebecca talked us through some insightful aspects of her interviews with family members with mitochondrial conditions, whereas my focus lay with the law and policy issues that may arise if Regulations are introduced to make lawful the use of these techniques in treatment. This area is, of course, subject to considerable attention in 2012 with the Nuffield Council on Bioethics due to publish its Report soon, and the HFEA in conjunction with Sciencewise-ERC due to undertake public dialogue later this year.

Our abstracts are below … a further post will follow on the morning’s session soon.

Relatively (im)material? mtDNA and genetic relatedness in legal discourse – Dr Caroline Jones

Mitochondrial donation poses the latest regulatory challenge for policy-makers in the context of assisted conception. In 2012 the Nuffield Council on Bioethics and the Human Fertilisation and Embryology Authority are consulting on ethical issues raised by this technique; including the potential relationships created by the use of three parties’ genetic material and the associated ramifications (eg whether or not there is a need to establish records of such donations and, if so, to whom should information be provided?) Hence, this technique poses both novel and familiar questions about ‘the genetic family’. This paper will explore the construction of the relative (in)significance of mitochondrial DNA in recent parliamentary debates, and current policy and consultation documents, in order to reflect on the ways in which the role of genetic connections – or lack thereof – are mediated in legal discourse and policy formation.

Who is the ‘third parent’? Mitochondria donation and implications for identity and kinship – Dr Rebecca Dimond

What is the link between mitochondrial DNA and a person’s identity?  What relationship does a woman have to a child conceived using her donated mitochondria?  These are key questions that the Nuffield Council on Bioethics have asked in exploring the ethical issues surrounding emerging techniques to prevent inherited mitochondrial disorders. There is currently no cure for mitochondrial disease but experimental reproductive technologies have now been developed which can allow women with mitochondrial disease to have children free from the disease. The technique involves replacing faulty mitochondria during an IVF cycle with healthy mitochondria from a donated egg. As the donated mitochondria (which contain a small number of genes) would be inherited by future generations, this technique requires a change in the law in order for it to be offered to patients and this has prompted calls for evidence by the Nuffield Council and HFEA. By drawing on interviews with patients with mitochondrial disease and media representations of the ‘three parent embryo’, in this presentation I consider how these techniques raise fundamental questions of identity and kinship.

Sociological take on donor conception

In 2012, Reproduction on May 7, 2012 at 6:58 am

Just a quick Bank Holiday message: here’s an interesting video by Prof. Carol Smart of the Morgan Centre, Manchester Uni, on ‘Legal cases involving donor conception’ as part of the ESRC Relative Strangers project that Carol and Dr Petra Nordqvist are currently undertaking. Please note their amendment – under the media link – re the terminology of ‘primary’ and ‘secondary’ parent in light of a recent Court of Appeal case, A v B and anor [2012] EWCA Civ 285, which you can read here.