{"id":15978,"date":"2019-06-06T14:54:29","date_gmt":"2019-06-06T12:54:29","guid":{"rendered":"https:\/\/news.embl.de\/?p=15978"},"modified":"2024-03-22T11:10:45","modified_gmt":"2024-03-22T10:10:45","slug":"editing-the-ethical-code","status":"publish","type":"post","link":"https:\/\/www.embl.org\/news\/events\/editing-the-ethical-code\/","title":{"rendered":"Editing the ethical code"},"content":{"rendered":"\n<p>Tim Lewens was always going to be a scientist. That is, until a gap year spent reading philosophy books left him with cold feet. He switched to philosophy during his first week at university, but immediately feared he had made a huge mistake leaving science behind. \u201cPhilosophy of science turned out to be a really fortuitous thing for me,\u201d says Lewens, now a professor of the subject at the University of Cambridge, UK.\u201cIt was exactly what I would have aimed at doing, had I known it existed!\u201d<\/p>\n\n\n\n<p>In February, he gave a <a href=\"https:\/\/www.embl.de\/aboutus\/science_society\/\">Science and Society<\/a> talk at EMBL Heidelberg entitled \u2018Blurring the germline \u2013 from genome editing to transgenerational epigenetic inheritance\u2019. In the talk, Lewens highlighted the special form of ethical concern that surrounds making heritable changes to the human genome. He then explored other heritable changes to human germline cells \u2013 cells that pass on their characteristics to offspring \u2013 suggesting that the genome should be just one part of a wider discussion about how we make decisions that impact future generations.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Differing definitions<\/h2>\n\n\n\n<p>Institutions around the world have differing stances on intentionally editing germline cells. The UNESCO International Bioethics Committee says \u201cinterventions on the human genome should be admitted only for preventive, diagnostic or therapeutic reasons and without enacting modifications for descendants\u201d.<sup><a href=\"http:\/\/www.unesco.org\/new\/en\/social-and-human-sciences\/themes\/bioethics\/international-bioethics-committee\/ibc-sessions\/twenty-second-session-and-ninth-session-of-comest\/\">1<\/a>&nbsp;<\/sup>By contrast, the US National Institutes of Health \u201cwill not fund any use of gene-editing technologies in human embryos\u201d,<a href=\"https:\/\/www.nih.gov\/about-nih\/who-we-are\/nih-director\/statements\/statement-nih-funding-research-using-gene-editing-technologies-human-embryos\"><sup>2&nbsp;<\/sup><\/a>whether those alterations are heritable or not. In the UK, however, one form of heritable germline modification \u2013 mitochondrial donation \u2013 has been legal since 2014.<\/p>\n\n\n<div class=\"vf-box vf-box--normal vf-box-theme--primary\">\n<h2 class=\"vf-box__heading\">What are mitochondria?<\/h2>\n<p class=\"vf-box__text\">Mitochondria are specialised components of most eukaryotic cells \u2013 cells that have a nucleus bound by a membrane. They convert the chemical energy gained from food into a form cells can use: adenosine triphosphate. Mitochondria are thought to have originated as free-living bacteria that were incorporated into larger eukaryotic cells around two billion years ago. There they formed a symbiotic relationship, providing energy in exchange for protection.<\/p>\n<p class=\"vf-box__text\">Due to their origins as organisms in their own right, mitochondria in human cells have their own DNA \u2013 a genome of 37 genes. Over time, many genes essential for mitochondrial function have migrated to the cell\u2019s nucleus. Mitochondria are typically passed only from mother to child, since there are many more mitochondria in egg cells than in sperm cells, and in many species there are mechanisms to destroy paternal mitochondria that enter the egg cell.<\/p>\n<p class=\"vf-box__text\"><\/p><\/div>\n\n\n\n<p>Defects in the mitochondrial DNA of a woman\u2019s egg cell can lead to a range of systemic diseases that can be fatal for her children. Women in the UK can have the nucleus of their fertilised egg cell placed inside the cell of a donor which has had its nucleus removed. All cells in the resulting embryo will have the mother\u2019s nuclear DNA, but the donor\u2019s functioning mitochondrial DNA. Not only will the child be disease free, but they will pass on the donated, healthy mitochondrial DNA to their own offspring: an inherited, and likely irreversible, germline modification.<\/p>\n\n\n\n<p>This treatment is possible because the UK Department of Health decided that \u201cgenetic modification involves germline modification of nuclear DNA that can be passed on to future generations\u201d.<a href=\"https:\/\/www.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/332881\/Consultation_response.pdf\"><sup>3&nbsp;<\/sup><\/a>Therefore, in the case of specific techniques that have had their safety thoroughly tested and which remain subject to strict, ongoing regimes of regulatory approval, editing mitochondrial DNA is legal.<\/p>\n\n\n\n<blockquote class=\"vf-blockquote\"><p>We\u2019re often not even sure what the criterion is, let alone if we can be confident whether or not we\u2019ve achieved it!<\/p><\/blockquote>\n\n\n\n<p>However, very similar diseases caused by faulty genes inside the nucleus, rather than the mitochondria, cannot be legally treated by gene editing. Lewens argues that, because of cases like these, altering the nuclear genetic code should not necessarily constitute an immovable ethical line. Rather, genuine concerns over editing the human genome should fall into the wider framework of how we balance the needs and risks associated with any decisions that affect future generations.<\/p>\n\n\n\n<p>In some cases, we may never know for sure if the decisions we make are the right ones. \u201cConsider Fred, a man living fifty years in the future,\u201d says Lewens, in our interview after his talk. \u201cIs his life better or worse because we used some controversial technology now? Well, if we hadn\u2019t, then the same Fred simply wouldn\u2019t exist.\u201d Should we care about some less personal, average wellbeing per capita then? \u201cIn that case, it would be best to have just a few people who were all super happy!\u201d As Lewens puts it, when it comes to measuring the success of our decisions, \u201cWe\u2019re often not even sure what the criterion is, let alone if we can be confident whether or not we\u2019ve achieved it!\u201d<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Risk and reward<\/h2>\n\n\n\n<p>Instead, Lewens argues, we should focus on the present and look at factors such as whether there are ways to achieve similar benefits to a new biological technology with less risk. \u201cIn general, if you look at why people\u2019s health fails,\u201d says Lewens, \u201cit can be due to well-understood but hard-to-action problems: people not eating the right kinds of food or not doing enough exercise, poor patient data-processing in hospitals, etc. In some cases, new technologies might not provide the best solutions.\u201d<\/p>\n\n\n\n<p>This is one part of Lewens\u2019 wider ethical framework for assessing the risks for future generations. \u201cIn ethical deliberations,\u201d he says, \u201cit\u2019s often not worth trying to build your argument upwards from your foundational beliefs [e.g. all gene editing is right or wrong], because the next person probably won\u2019t agree with them.\u201d Instead, he tells me, the most important factors are compassion and open discussion, taking into account as many opinions as possible and carefully measuring benefits, costs and risks. \u201cWhen any new technology has costs and benefits, it\u2019s sensible not just to make sure the benefits outweigh the costs, but that the people who suffer most from the costs gain the most from the benefits too.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Professor Tim Lewens challenges the human genome\u2019s unique place in bioethics<\/p>\n","protected":false},"author":67,"featured_media":15979,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[4,3],"tags":[537,1004,630,664,43,60],"embl_taxonomy":[],"class_list":["post-15978","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-lab-matters","tag-dna","tag-ethics","tag-gene-editing","tag-genome","tag-heidelberg","tag-science-and-society"],"acf":{"article_intro":"<p>Professor Tim Lewens challenges the human genome\u2019s unique place in bioethics<\/p>\n","related_links":[{"link_description":"Gene editing 3.0","link_url":"https:\/\/news.embl.de\/science\/1608-charpentier\/"},{"link_description":"CRISPR: from clipping scissors to word processor","link_url":"https:\/\/news.embl.de\/science\/crispr-from-clipping-scissors-to-word-processor\/"},{"link_description":"How to fix a cellular powerhouse","link_url":"https:\/\/news.embl.de\/science\/1412_mitochondrial_disorders\/"}],"article_sources":[{"source_description":"<p>1. Report of the IBC on Updating its Reflection on the Human Genome and Human Rights<\/p>\n","source_link_url":"http:\/\/www.unesco.org\/new\/en\/social-and-human-sciences\/themes\/bioethics\/international-bioethics-committee\/ibc-sessions\/twenty-second-session-and-ninth-session-of-comest\/"},{"source_description":"<p>2. Statement on NIH funding of research using gene-editing technologies in human embryos<\/p>\n","source_link_url":"https:\/\/www.nih.gov\/about-nih\/who-we-are\/nih-director\/statements\/statement-nih-funding-research-using-gene-editing-technologies-human-embryos"},{"source_description":"<p>3. Department of Health. Mitochondrial Donation: Government response to the consultation on draft regulations to permit the use of new treatment techniques to prevent the transmission of a serious mitochondrial disease from mother to child 22 July 2014.<\/p>\n","source_link_url":"https:\/\/www.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/332881\/Consultation_response.pdf"}],"vf_locked":false,"featured":false,"color":"#007B53","link_color":"#fff","show_featured_image":false,"in_this_article":false,"youtube_url":"","mp4_url":"","video_caption":"","press_contact":"None","translations":false},"embl_taxonomy_terms":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.2 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Editing the ethical code | EMBL<\/title>\n<meta name=\"description\" content=\"Professor Tim Lewens challenges the human genome\u2019s unique place in bioethics during his Science &amp; Society talk at EMBL Heidelberg in February\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.embl.org\/news\/events\/editing-the-ethical-code\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Editing the ethical code | EMBL\" \/>\n<meta property=\"og:description\" content=\"Professor Tim Lewens challenges the human genome\u2019s unique place in bioethics during his Science &amp; 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