{"id":256,"date":"2014-12-18T21:57:48","date_gmt":"2014-12-18T21:57:48","guid":{"rendered":"http:\/\/blogs.kent.ac.uk\/klsllm\/?p=256"},"modified":"2015-01-04T19:57:01","modified_gmt":"2015-01-04T19:57:01","slug":"progress-educational-trust-conference-the-commercialisation-of-life","status":"publish","type":"post","link":"https:\/\/blogs.kent.ac.uk\/klsllm\/2014\/12\/18\/progress-educational-trust-conference-the-commercialisation-of-life\/","title":{"rendered":"Progress Educational Trust Conference: The Commercialisation of Life"},"content":{"rendered":"

Having been awarded funding from the Graduate Studies Initiative Fund from Kent Law School, I was\u00a0pleased to be able to organise\u00a0for myself and two other LL.M. students to attend the PET Conference<\/a> in London on December 2nd. The\u00a0conference explored controversial topics on the role of commerce in genetics and fertility treatment. These topics were a shift away from my interests in end-of-life issues towards areas which have sparked my interest since commencing the LL.M. in Medical Law and Ethics.<\/p>\n

Presentations were grouped into four categories: ‘Commercialisation and the Moral Obligation to Create Designer Babies’, ‘Whose Genes Are They Anyway?’, ‘The Baby Business’, and ‘The Real Cost of Infertility’. The speakers and chairs were renowned academics and practitioners including:\u00a0Professor Robert Winston,\u00a0Dr K\u00e1ri Stef\u00e1nsson,\u00a0Professor Julian Savulescu,\u00a0Peter Thompson,\u00a0Professor Willem Ombelet,\u00a0Dr Clare Gerada,\u00a0Baroness Ruth Deech,\u00a0Dr Stuart Hogarth,\u00a0Jeremy Laurance,\u00a0Dr Yacoub Khalaf,\u00a0Vivienne Parry,\u00a0Professor Sarah Franklin,\u00a0Fiona Fox,\u00a0John Parsons\u00a0and\u00a0Sarah Norcross.<\/p>\n

Each\u00a0presentation was followed by a discussion period where the panel engaged in debate and responded to questions from the audience. The audience was a diverse group – made up of academics, researchers and professionals in genetics and fertility, practising solicitors, and patients – adding fascinating perspectives which enhanced the discussions.<\/p>\n

The experience was intellectually stimulating, rewarding, and strangely anxiety-provoking. When asked for a show of hands to indicate feelings of excitement or increased anxiety over scientific advancements in genetics and fertility, the room was relatively divided. Admittedly, I was in the ‘somewhat anxious’ group.\u00a0With such rapid advancements in genetic science there is an urgent need to\u00a0consider the sorts of legal, ethical, political, social, and economic implications of these new technologies. Yes, there are new ways to acquire once inaccessible genetic information; and yes, this information can tell us about some of our\u00a0genetic pre-dispositions – but, where is this information going? how is it being used? more crucially, how will it be protected? Such concerns and fear of genetic discrimination in the context of employment and insurance led to the U.S. enacting the Genetic Information Non-discrimination Act in 2008 (GINA). But what about the UK? Currently, the sole protection for genetic information is embodied in the Concordat and Moratorium on Genetics and Insurance<\/a>, a voluntary agreement between the Government and the Association of British Insurers. The question is: does this agreement offer adequate protection?<\/p>\n

I had the opportunity to pitch the question of privacy and data protection to the panel.\u00a0Concerns about privacy and genetic discrimination were acknowledged by both Dr Stuart Hogarth<\/a> and Vivienne Parry<\/a>. Parry remarked that insurance and protection is a major issue, but quickly directed focus towards to NHS which is accessible and free to patients regardless of risk. Dr Hogarth was confident that concerns of genetic discrimination could be addressed by expanding the Disability Discrimination Act to include ‘risk of disease’. These concise responses left me wanting to know more.<\/p>\n

Having recently researched and written about the inadequacies of the legislative approach in preventing genetic discrimination, I am still left wondering about the risks and implications of genetic discrimination, and the most appropriate mode and level of protection. I get the sense that the excitement about breakthroughs in genetic science and the potential for personalised medicine can detract from privacy concerns and risks of genetic discrimination. Genetic information is extremely personal and inherently sensitive information, protection of this information should not be an afterthought.<\/p>\n

The answers I received were brief, and did not exactly ease my anxiety about where this revolutionary technology will land us. In fact, I left the conference with more questions than answers. But,\u00a0I guess that is the aim and fundamental importance of conferences such as this – to provoke thought, to stir controversy, and to keep discussions going. For me, the PET Conference did just that.<\/p>\n","protected":false},"excerpt":{"rendered":"

Having been awarded funding from the Graduate Studies Initiative Fund from Kent Law School, I was\u00a0pleased to be able to organise\u00a0for myself and two other … Read more<\/a><\/p>\n","protected":false},"author":39698,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/posts\/256"}],"collection":[{"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/users\/39698"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/comments?post=256"}],"version-history":[{"count":4,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/posts\/256\/revisions"}],"predecessor-version":[{"id":287,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/posts\/256\/revisions\/287"}],"wp:attachment":[{"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/media?parent=256"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/categories?post=256"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.kent.ac.uk\/klsllm\/wp-json\/wp\/v2\/tags?post=256"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}