![](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/08\/babies-1400X375.png\")
<\/p>\nLouise PayWednesday 13 August 2025<\/p>\n
<\/p>\n
In June, it was announced that Genomics England\u2019s Generation Study \u2013 designed to sequence 100,000 newborn genomes to identify over 200 treatable genetic conditions \u2013 will expand to include every baby born in England by 2030.\u00a0<\/p>\n
The initiative is backed by the UK government\u2019s \u00a3650m investment in genomic technologies and aligns with its focus on building a prediction- and prevention-focused National Health Service (NHS). Undoubtedly, such screening will facilitate early diagnosis and intervention in regards to rare, treatable genetic conditions, potentially sparing families years of uncertainty and hastening the initiation of life-saving treatment. Currently, \u2018heel prick\u2019 newborn screening tests are used, with the ability to detect only a group of nine rare conditions. The genome sequencing now proposed will greatly expand the range of conditions tested for. In doing so it\u2019s expected to generate cost savings in addition to the reduced burden of late diagnoses.\u00a0<\/p>\n
The move has been welcomed by Genetic Alliance UK, which stated that the \u2018programme holds incredible promise for speeding up the diagnosis of genetic, rare, and undiagnosed conditions.\u2019 The charity stressed the importance of transparency around how data will be used and the risks managed, and about how results will be interpreted.<\/p>\n
\t\tThere are issues with patient choice in terms of future autonomy if a parent consents to genomic sequencing and informs the child, because the child is not given a choice<\/p>\n
\n\t\tAlison Choy Flannigan<\/p>\n
Officer, IBA Healthcare and Life Sciences Law Committee\n<\/p>\n
\u2018There are a number of legal and ethical issues with genome sequencing,\u2019 says Alison Choy Flannigan, an officer of the IBA Healthcare and Life Sciences Law Committee. \u2018Each person\u2019s genome is unique and cannot be completely de-identified for privacy protection.\u2019 This is to say that it\u2019s impossible to entirely protect the privacy of an individual whose genome is sequenced. Further, \u2018there are issues with patient choice in terms of future autonomy if a parent consents to genomic sequencing and informs the child, because the child is not given a choice,\u2019 she adds. \u2018There are also issues when the parents are in disagreement on the issue, particularly if they are separated.\u2019<\/p>\n
\u2018Genomic data is not restricted to the person who provided [their] consent [\u2026] it is also highly identifying about the person\u2019s biological relatives, such as parents, children, siblings or cousins,\u2019 says Elysangela Rabelo, a partner in the Life Sciences and Healthcare practice at Demarest Advogados, S\u00e3o Paulo. Giulio Gatti, an attorney-at-law in the same practice, cites research showing that \u2018a genetic database needs to include only two per cent of the target population to enable third-degree kinship identification for virtually anyone.\u2019<\/p>\n
While the UK\u2019s NHS will test only for treatable conditions, genome sequencing can reveal uncertain variants and adult-onset disease risks, raising ethical concerns. Data is stored by the Generation Study until the age of 16, at which point participants may opt to continue. \u2018Healthcare providers have a duty of care to their patients. It is really important that appropriately qualified genetic counsellors are involved,\u2019 says Flannigan, who\u2019s a partner and Co-Lead Healthcare at Hall & Wilcox in Sydney.<\/p>\n
Identifying risk variants doesn\u2019t guarantee the emergence of disease and may lead to unnecessary treatment or anxiety, meanwhile. Gail Vance, Professor Emeritus of Medical and Molecular Genetics at IU School of Medicine, says that testing for late-onset disorders \u2013 which is currently excluded from the Generation Study \u2013 shouldn\u2019t be carried out in respect of children as it means \u2018robbing them of autonomy and often causing family disruption and differential parenting.\u2019<\/p>\n
Genomics England says that \u2018thinking about ethics\u2019 has been embedded throughout the Generation Study. This has involved the creation of an Ethics Working Group, which \u2018deliberated issues during the design of the study\u2019, as well as through public engagement on the subject, for example.<\/p>\n
June also saw the launch of the Synthetic Genome Project (SynHG), a significant advancement in genomic technologies. This \u00a310m project, funded by the London charitable foundation the Wellcome Trust, could substantially enhance our understanding of genetic diseases by improving laboratory modelling and genome manipulation strategies and facilitating the development of synthetic cells for research, drug development and therapeutic applications.<\/p>\n
\u2018Synthetic genome research and synthetic biology more broadly is an area of focus in the UK and set to be a big area of growth,\u2019 says Charlotte Tillett, an officer of the IBA Healthcare and Life Sciences Law Committee. \u2018Given the rapid development, there is a real risk that the development of the regulatory framework will not be able to keep pace.\u2019 Tillett, who\u2019s a partner at Stevens & Bolton, adds that \u2018the use of synthetic biology brings incredible advances in science as well as numerous legal, scientific, ethical and other considerations.\u2019<\/p>\n
Synthesising human DNA raises ethical concerns over misuse. Without global regulation, progress may outpace safeguards. Flannigan, for example, highlights concerns about biological warfare. Meanwhile, Rabelo explains \u2018health data are highly critical and valuable on the illegal market [\u2026] making them frequent targets for cyberattacks.\u2019 Gatti adds \u2018interoperability and intensive use of these data by application programming interfaces, wearables and digital platforms increase the risks of leaks and misuse.\u2019\u00a0<\/p>\n
Equitable access is another concern. \u2018Unfortunately, genomic technology is expensive and therefore, similar to good healthcare, the reality is that it is more available to wealthy countries and wealthy people,\u2019 says Flannigan. \u2018We experienced inequity of access first-hand during the Covid-19 pandemic with the availability of vaccines.\u2019\u00a0<\/p>\n
According to the SynHG website, the Project is \u2018pro-actively engaging in the social, ethical, economic and policy questions that may arise as the tools and technologies advance.\u2019<\/p>\n
Image credit: MDBPIXS\/AdobeStock.com<\/p>\n","protected":false},"excerpt":{"rendered":"Louise PayWednesday 13 August 2025 In June, it was announced that Genomics England\u2019s Generation Study \u2013 designed to…\n","protected":false},"author":2,"featured_media":67840,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[25],"tags":[916,90,56,54,55],"class_list":["post-67839","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-genetics","tag-science","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/67839","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=67839"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/67839\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/67840"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=67839"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=67839"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=67839"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}