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		<title>Articles from the PHG Foundation Newsletter</title>
		<link>http://www.phgfoundation.org/newsletter</link>
		<description>Articles from the PHG Foundation Newsletter</description>
		<copyright>PHG Foundation</copyright>
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			<title>UK consultation on first national plan for rare diseases</title>
			<link>http://www.phgfoundation.org/news/month/03/2012/#story_11383</link>
			<pubDate>Mon, 05 Mar 2012 00:00:00 +0000</pubDate>
			<description><![CDATA[ The UK Department of Health has launched a new consultation on proposed plans for the first national strategy for rare diseases.  &amp;nbsp;  A rare disease is one that affects fewer than five people per 10,000; although they are individually rare, together they affect over 5% of the UK population (3.5  ... ]]></description>
		</item>
				<item>
			<title>Public views sought on 'three-parent IVF' to prevent disease</title>
			<link>http://www.phgfoundation.org/news/month/01/2012/#story_11051</link>
			<pubDate>Fri, 20 Jan 2012 00:00:00 +0000</pubDate>
			<description><![CDATA[ A public consultation is to seek public views on new in vitro fertilisation (IVF) techniques involving the use of genetic material from three adults intended to create embryos free from mitochondrial diseases.  The regulatory Human Fertilisation and Embryology Authority (HFEA) has been charged joint ... ]]></description>
		</item>
				<item>
			<title>More oversight needed for animals containing human material</title>
			<link>http://www.phgfoundation.org/news/month/07/2011/#story_9267</link>
			<pubDate>Tue, 26 Jul 2011 00:00:00 +0100</pubDate>
			<description><![CDATA[ The Academy of Medical Sciences (AMS) has called for more sensitive oversight of some forms of research involving animals containing human material (ACHM).  &amp;nbsp;  A new AMS report has said that, whilst most such research (for example, using genetically modified mice that contain a human gene or ge ... ]]></description>
		</item>
				<item>
			<title>Priorities for public health genomics in the US</title>
			<link>http://www.phgfoundation.org/news/month/07/2011/#story_9112</link>
			<pubDate>Wed, 13 Jul 2011 00:00:00 +0100</pubDate>
			<description><![CDATA[ Input is requested on the most important activities, their expected outcomes, the policies needed to achieve them, potential barriers and solutions, and the roles of different bodies in working towards the desired outcomes. The consultation is open until 1st August. ]]></description>
		</item>
				<item>
			<title>Views sought on emerging biotechnologies and ethical issues</title>
			<link>http://www.phgfoundation.org/news/month/05/2011/#story_8593</link>
			<pubDate>Mon, 23 May 2011 00:00:00 +0100</pubDate>
			<description><![CDATA[ The Nuffield Council on Bioethics has launched a public consultation on ethical, legal, social and policy issues arising from emerging biotechnologies.  The findings will feed into the work of a UK group examining how policy-makers and wider society respond to new forms of biotechnology and engage w ... ]]></description>
		</item>
				<item>
			<title>Proof of safety needed for mitochondrial disease treatments</title>
			<link>http://www.phgfoundation.org/news/month/04/2011/#story_8206</link>
			<pubDate>Wed, 20 Apr 2011 00:00:00 +0100</pubDate>
			<description><![CDATA[ The&amp;nbsp;Human Fertilisation and Embryology Authority (HFEA) has said that further experiments are required to demonstrate the safety of new techniques to prevent mitochondrial diseases&amp;nbsp;by so-called &amp;lsquo;three parent IVF&amp;rsquo;.  &amp;nbsp;  Responding to a government request for expert opinion ( ... ]]></description>
		</item>
				<item>
			<title>UK considers moves to prevent mitochondrial disease</title>
			<link>http://www.phgfoundation.org/news/month/03/2011/#story_7891</link>
			<pubDate>Fri, 11 Mar 2011 00:00:00 +0000</pubDate>
			<description><![CDATA[ The Human Fertilisation and Embryology Authority (HFEA) is to examine the possibility of mitochondrial transfer as a technique to allow families affected by mitochondrial disease to have healthy children.  &amp;nbsp;  Mitochondrial diseases are caused by mutations in the genes for crucial sub-cellular c ... ]]></description>
		</item>
				<item>
			<title>Lack of medical support for patients with rare diseases</title>
			<link>http://www.phgfoundation.org/news/month/02/2011/#story_7792</link>
			<pubDate>Mon, 28 Feb 2011 00:00:00 +0000</pubDate>
			<description><![CDATA[ A new report suggests that the majority of people living with rare diseases in the UK are unable to access suitable medical expertise to help explain and manage their conditions.  &amp;nbsp;  Rare diseases &amp;ndash; many of which are primarily genetic conditions &amp;ndash; are those that affect fewer than on ... ]]></description>
		</item>
				<item>
			<title>Should egg and sperm donation between relatives be allowed?</title>
			<link>http://www.phgfoundation.org/news/month/01/2011/#story_7336</link>
			<pubDate>Sun, 23 Jan 2011 00:00:00 +0000</pubDate>
			<description><![CDATA[ It is suggested that situations that are further removed from those that might occur legally and without artificial intervention cause the most public unease. The HFEA proposes options such as prohibiting the mixing of sperm and eggs between close genetic relatives, or going further and prohibiting  ... ]]></description>
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				<item>
			<title>Report on personalised healthcare seeks more regulation</title>
			<link>http://www.phgfoundation.org/news/month/10/2010/#story_5837</link>
			<pubDate>Tue, 12 Oct 2010 00:00:00 +0100</pubDate>
			<description><![CDATA[ The Nuffield Council on Bioethics has released a new report on personalised healthcare, calling for more action from the UK Government to help people use online health information and services safely and effectively.  &amp;nbsp;  The new report was informed by a major external consultation about issues  ... ]]></description>
		</item>
				<item>
			<title>Review of UK regulation and governance of medical research</title>
			<link>http://www.phgfoundation.org/news/month/04/2010/#story_5374</link>
			<pubDate>Fri, 23 Apr 2010 00:00:00 +0100</pubDate>
			<description><![CDATA[ Last month the Health Secretary Andy Burnham announced that the Academy of Medical Sciences (AMS) has been commissioned to produce a review of the current regulatory and governance framework for medical research in the UK, which AMS president Professor Sir John Bell described as &amp;lsquo;stifling&amp;rsqu ... ]]></description>
		</item>
				<item>
			<title>Consultation on tissue donation for treatment and research</title>
			<link>http://www.phgfoundation.org/news/month/04/2010/#story_5372</link>
			<pubDate>Thu, 22 Apr 2010 00:00:00 +0100</pubDate>
			<description><![CDATA[ The Nuffield Council on Bioethics, which examines ethical issues in biology and medicine, has launched a new consultation on the use of human organs, tissues and cells for use in medical treatment and research. They are looking particularly at how society should respond to increasing demand; whether ... ]]></description>
		</item>
				<item>
			<title>Faster access to treatments and diagnostics for rare diseases?</title>
			<link>http://www.phgfoundation.org/news/month/12/2009/#story_5073</link>
			<pubDate>Fri, 11 Dec 2009 00:00:00 +0000</pubDate>
			<description><![CDATA[ The UK National Health Service (NHS) has launched a consultation on a proposed pilot scheme to speed up access to new therapeutics for patients with rare diseases. Normally, novel treatments must be thoroughly evaluated and approved according to strict criteria by the National Institute for Health a ... ]]></description>
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				<item>
			<title>Inquiry into synthetic biology, stem cells and genetic engineering</title>
			<link>http://www.phgfoundation.org/news/month/11/2009/#story_4929</link>
			<pubDate>Tue, 17 Nov 2009 00:00:00 +0000</pubDate>
			<description><![CDATA[ The new Science and Technology Committee of the UK House of Commons has launched a Bioengineering Inquiry, with a specific focus on &amp;lsquo;how the UK can maintain a globally competitive position in emerging and existing bioengineering research fields&amp;rsquo;. The specific areas of interest are synthe ... ]]></description>
		</item>
				<item>
			<title>UK Government U-turn over DNA database</title>
			<link>http://www.phgfoundation.org/news/month/10/2009/#story_4898</link>
			<pubDate>Mon, 26 Oct 2009 00:00:00 +0000</pubDate>
			<description><![CDATA[ The UK government has withdrawn its controversial proposals for the national DNA database (see BBC news report), which included keeping the DNA profiles of people without convictions for between six and twelve years (see previous news). &amp;nbsp;The proposals were open for public consultation from May  ... ]]></description>
		</item>
				<item>
			<title>Guidance on patient confidentiality and genetic diseases</title>
			<link>http://www.phgfoundation.org/news/month/09/2009/#story_4850</link>
			<pubDate>Tue, 29 Sep 2009 00:00:00 +0100</pubDate>
			<description><![CDATA[ New guidance released by the UK General Medical Council (GMC) says that doctors may in some circumstances share confidential genetic information about patients with their relatives against the wishes of the patient. The guidance recognises that the obligation of confidentiality is not always absolut ... ]]></description>
		</item>
				<item>
			<title>HGC public consultation on DTC genetic testing services</title>
			<link>http://www.phgfoundation.org/news/month/09/2009/#story_4807</link>
			<pubDate>Tue, 08 Sep 2009 00:00:00 +0100</pubDate>
			<description><![CDATA[ The UK Human Genetics Commission (HGC) has launched a public consultation on its draft document A Common Framework of Principles for direct-to-consumer genetic testing services. This follows on from their earlier reports on genetic tests supplied to the public, Genes Direct published in 2003 and Mor ... ]]></description>
		</item>
				<item>
			<title>Patient involvement in research: guidance and consultation</title>
			<link>http://www.phgfoundation.org/news/month/07/2009/#story_4732</link>
			<pubDate>Tue, 28 Jul 2009 00:00:00 +0100</pubDate>
			<description><![CDATA[ Major UK medical research charity the Wellcome Trust recently released new guidelines for primary care practitioners on the use of patient data in research, developed following a national meeting of GPs, researchers and patient groups to discuss this issue last year. Towards Consensus for Best Pract ... ]]></description>
		</item>
				<item>
			<title>PHG Foundation responds to the Nuffield Council on Bioethics consultation on personalised healthcare</title>
			<link>http://www.phgfoundation.org/news/month/07/2009/#story_4722</link>
			<pubDate>Thu, 16 Jul 2009 00:00:00 +0100</pubDate>
			<description><![CDATA[ The PHG Foundation has produced a detailed response to the current public consultation from the Nuffield Council on Bioethics on &amp;ldquo;Medical Profiling and online medicine: the ethics of &amp;lsquo;personalised' healthcare in a consumer age&amp;quot; (see previous news). The consultation focuses on the et ... ]]></description>
		</item>
				<item>
			<title>House of Lords report on Genomic Medicine</title>
			<link>http://www.phgfoundation.org/news/month/07/2009/#story_4705</link>
			<pubDate>Wed, 08 Jul 2009 00:00:00 +0100</pubDate>
			<description><![CDATA[ The UK House of Lords Science and Technology Committee has published a new report, Genomic Medicine, the result of a long-running inquiry into recent advances in genomics and related fields and their implications for healthcare, the UK Government and the National Health Service (NHS). It calls for a ... ]]></description>
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