Latest news with #IVF
Irish Times
37 minutes ago
- Health
- Irish Times
Ireland far behind other countries for IVF genetic testing, doctors and advocates say
Eight healthy babies were recently conceived via in vitro fertilisation (IVF) in the UK using DNA from three people to avoid inheriting serious genetic mutations, but it could be many years before these procedures are permitted under law in Ireland. The remarkable scientific development was years in the making. The procedure is carried out in cases where the mother is known to have a genetic mutation in her mitochondrial DNA – the power house of the cell that makes up human tissue. The mother's egg is artificially fertilised by the father's sperm, and the genetic material from this embryo is extracted and transferred to a donor's egg, one which doesn't have mitochondrial mutation. The vast majority of the DNA is that of the mother and father, with the donor only providing less than a tenth of a per cent to the embryo's genetic code. It nonetheless has the potential to provide hope for families around the world. Graphic: Newcastle University/Newcastle Hospitals NHS Foundation Trust/PA Wire Dr Jane Farrar, from Trinity College 's genetics department, explains that mutations in the mitochondria are rare, yet manifest themselves in serious health issues from birth. Babies born with these mutations often suffer brain, heart and muscle failure from a young age as well as developmental delays. Dr Farrar says there is a range of mitochondrial disease with a spectrum of symptoms, all of which are severe. Leber Hereditary Optic Neuropathy (LHON) can lead to quite sudden, sometimes total loss of vision in both eyes. Dr Farrar says this is an onset disease and often takes place in young adulthood. On the other hand, Leigh Syndrome is a disorder characterised by progressive and gradual loss of muscle use and brain function. This is evident from infancy and early childhood, she says. The eight healthy babies in the UK were born after about 20 years of genetic and medical research, and in 2015 a change in law allowed for this procedure to be carried out. In spite of the Church of England and other religious leaders questioning its ethics, the UK parliament passed it by a two-thirds majority. IVF clinics in Ireland are not permitted under law to carry out this procedure. The Department of Health calls it 'a relatively new and highly complex form of assisted human reproduction technology'. A department spokesperson said the Health (Assisted Human Reproduction) Act 2024 'establishes a regulatory framework for fertility clinics and assisted human reproduction (AHR) treatments, aiming to ensure consistency, oversight and ethical standards in practice and research'. The National Infertility Support and Information Group (NISIG) said 'while work is under way to establish a regulatory authority for Assisted Human Reproduction (AHR) treatment in Ireland as part of this legislation, research like this in the UK highlights just how far behind Ireland still is in comparison to other countries'. They said it is imperative the government's regulatory framework includes an authority that 'enables the use of pre-implantation genetic testing (PGT) of embryos; posthumous assisted human reproduction; and embryo and stem cell research'. Dr John Waterstone, a graduate of Trinity College's genetics department as well as its medical school, is the founder and director of Waterstone Clinic, one of Ireland's largest IVF providers. While he acknowledges the 'very experimental' nature of the procedure, he says 'it is pretty remarkable that they've managed to do it. It's an incredible achievement for them'. He says that for some 'it's ethically questionable' to facilitate genetic modification of embryos but adds that this is for 'couples who have found themselves in tragic situations. Really traumatic, horrendous experiences of parents' children dying in infancy after being born with rare genetic mutations'. Waterstone Clinic does provide pre-implantation genetic testing on embryos to discover if parents are unknowingly passing down genetic mutations that could cause serious health conditions in their children. However, Dr Waterstone says that the kind of procedure that took place in the UK is unlikely to come to Ireland anytime soon. 'I don't really think in the foreseeable future that anyone in Ireland who's diagnosed with mitochondrial disease will receive that treatment here. It's more viable to go to the UK,' he says. Given the rarity of these mutations, 'one in 5,000 individuals might have mitochondrial diseases', he says and the necessity for this treatment is not widespread.
The Advertiser
9 hours ago
- Health
- The Advertiser
IVF hack inquiry confirms details published on dark web
An IVF provider targeted in a cyber attack has written to patients confirming their stolen personal information has been posted on the dark net. "The publication has occurred on a part of the dark web, which is a hidden part of the internet," according to Genea chief executive Tim Yeoh. "This data is not readily searchable or accessible." An investigation following a security breach at the company on February 14 determined its patient management systems were accessed by an unauthorised third party or "threat actor". The impacted servers were a store for a raft of personal information including full names, emails, addresses, phone numbers, Medicare card numbers, private health insurance details, medical history, diagnoses, treatments, medications and prescriptions. The health data included clinical information related to services provided by Genea and other companies. There was no evidence the hackers stole financial information such as credit card details or bank account numbers. An international ransomware group published what it claimed was a sample of the confidential data after the attack forced Genea to shut down for several days. The group claiming responsibility reportedly posted screenshots on dark net sites, boasting it had captured hundreds of gigabytes of patient data dating back more than five years. Genea has not said how many customers have been impacted. "We understand this news may be concerning for you," Mr Yeo wrote to customers. "We unreservedly apologise for any distress that this may cause you." He said Genea had undertaken a comprehensive analysis of the published stolen details to identify those impacted by the breach and the personal information relating to them. The provider has been granted a court-ordered injunction to prevent anyone from accessing, using, disseminating or publishing any of the illegally obtained data. It has also partnered with national identity and cyber support service IDCare to guard against potential future lapses and to offer counselling to affected clients. An IVF provider targeted in a cyber attack has written to patients confirming their stolen personal information has been posted on the dark net. "The publication has occurred on a part of the dark web, which is a hidden part of the internet," according to Genea chief executive Tim Yeoh. "This data is not readily searchable or accessible." An investigation following a security breach at the company on February 14 determined its patient management systems were accessed by an unauthorised third party or "threat actor". The impacted servers were a store for a raft of personal information including full names, emails, addresses, phone numbers, Medicare card numbers, private health insurance details, medical history, diagnoses, treatments, medications and prescriptions. The health data included clinical information related to services provided by Genea and other companies. There was no evidence the hackers stole financial information such as credit card details or bank account numbers. An international ransomware group published what it claimed was a sample of the confidential data after the attack forced Genea to shut down for several days. The group claiming responsibility reportedly posted screenshots on dark net sites, boasting it had captured hundreds of gigabytes of patient data dating back more than five years. Genea has not said how many customers have been impacted. "We understand this news may be concerning for you," Mr Yeo wrote to customers. "We unreservedly apologise for any distress that this may cause you." He said Genea had undertaken a comprehensive analysis of the published stolen details to identify those impacted by the breach and the personal information relating to them. The provider has been granted a court-ordered injunction to prevent anyone from accessing, using, disseminating or publishing any of the illegally obtained data. It has also partnered with national identity and cyber support service IDCare to guard against potential future lapses and to offer counselling to affected clients. An IVF provider targeted in a cyber attack has written to patients confirming their stolen personal information has been posted on the dark net. "The publication has occurred on a part of the dark web, which is a hidden part of the internet," according to Genea chief executive Tim Yeoh. "This data is not readily searchable or accessible." An investigation following a security breach at the company on February 14 determined its patient management systems were accessed by an unauthorised third party or "threat actor". The impacted servers were a store for a raft of personal information including full names, emails, addresses, phone numbers, Medicare card numbers, private health insurance details, medical history, diagnoses, treatments, medications and prescriptions. The health data included clinical information related to services provided by Genea and other companies. There was no evidence the hackers stole financial information such as credit card details or bank account numbers. An international ransomware group published what it claimed was a sample of the confidential data after the attack forced Genea to shut down for several days. The group claiming responsibility reportedly posted screenshots on dark net sites, boasting it had captured hundreds of gigabytes of patient data dating back more than five years. Genea has not said how many customers have been impacted. "We understand this news may be concerning for you," Mr Yeo wrote to customers. "We unreservedly apologise for any distress that this may cause you." He said Genea had undertaken a comprehensive analysis of the published stolen details to identify those impacted by the breach and the personal information relating to them. The provider has been granted a court-ordered injunction to prevent anyone from accessing, using, disseminating or publishing any of the illegally obtained data. It has also partnered with national identity and cyber support service IDCare to guard against potential future lapses and to offer counselling to affected clients. An IVF provider targeted in a cyber attack has written to patients confirming their stolen personal information has been posted on the dark net. "The publication has occurred on a part of the dark web, which is a hidden part of the internet," according to Genea chief executive Tim Yeoh. "This data is not readily searchable or accessible." An investigation following a security breach at the company on February 14 determined its patient management systems were accessed by an unauthorised third party or "threat actor". The impacted servers were a store for a raft of personal information including full names, emails, addresses, phone numbers, Medicare card numbers, private health insurance details, medical history, diagnoses, treatments, medications and prescriptions. The health data included clinical information related to services provided by Genea and other companies. There was no evidence the hackers stole financial information such as credit card details or bank account numbers. An international ransomware group published what it claimed was a sample of the confidential data after the attack forced Genea to shut down for several days. The group claiming responsibility reportedly posted screenshots on dark net sites, boasting it had captured hundreds of gigabytes of patient data dating back more than five years. Genea has not said how many customers have been impacted. "We understand this news may be concerning for you," Mr Yeo wrote to customers. "We unreservedly apologise for any distress that this may cause you." He said Genea had undertaken a comprehensive analysis of the published stolen details to identify those impacted by the breach and the personal information relating to them. The provider has been granted a court-ordered injunction to prevent anyone from accessing, using, disseminating or publishing any of the illegally obtained data. It has also partnered with national identity and cyber support service IDCare to guard against potential future lapses and to offer counselling to affected clients.
Washington Post
16 hours ago
- Health
- Washington Post
Post readers react to elite's aim to create ‘super-babies'
Technology Post readers react to elite's aim to create 'super-babies' 'I'm torn,' one reader said. 'Having a child which would never develop a terrible disease ... would be wonderful. However, a little like playing god.' (Camille Cohen/For The Washington Post) By Michael Blackmon and Alexandra Pannoni July 19, 2025 at 7:00 a.m. EDT Just now 1 min Post reporters Elizabeth Dwoskin and Yeganeh Torbati published a must-read article detailing how Silicon Valley elites, including Elon Musk, are using novel gene technology to produce 'super-babies.' The article set off a lively discussion in the comments section, where readers of various ages and perspectives sounded off. Eager to hear more, we published a callout asking readers how far they would go to ensure a healthy baby and added a similar query to the prompt of the original article. We received more than a thousand responses. Here are some of the best reader reactions, which have been lightly edited for length and clarity and are printed with permission. Jessica Orlando, 37 Los Angeles ' I am coming at this question from a different perspective, having gone through IVF to combat infertility, and we now have an amazing son who is 19 months old. Our journey was different from many in that we went through four rounds of egg retrievals and embryo selections, but none made our doctor's cut for transplantation based on genetic testing given that the ones that made it each had what were considered genetic abnormalities. I personally reached my end point of doing more retrievals so we decided to transfer two abnormal embryos, asking our doctor to use the best quality that were available, and one of them grew into our son. He's wonderful and perfect in our eyes — no health issues or abnormalities and has an amazing personality and disposition. If we had followed our doctor's advice, he wouldn't exist today. ' Maggie Cooper, 43 Arlington, Virginia ' I am a carrier for cystic fibrosis (and have a mild form of the disease that presents in my lungs/sinuses), so my husband did genetic testing to see if he also was a carrier. While CF is not quite the early death sentence it used to be, it was not something we felt comfortable knowingly passing to a child. Thankfully he was not a carrier. Nine years ago, while I was pregnant with our first daughter, my husband was diagnosed with Stage 3 oligodendroglioma — a rare brain cancer. He had brain surgery and underwent radiation and chemo and, while there is no remission for this type of cancer, he has had no recurrence. He was adamant that we not have another child until his doctors could determine if his cancer was hereditary. After participating in natural history studies at NIH for many years, his doctors felt very confident that his cancer was not linked to genetics. We had our second daughter (via IVF) in summer 2023. ' Brenda Feeney, 79 Leesburg, Virginia ' I'm torn. Having a child which would never develop a terrible disease (Parkinson's, MS, etc.) would be wonderful. However, a little like playing god. Only the wealthy will be able to do this, so is their gene pool better than the rest of our? Most of the wealthy individuals we must endure today are cruel, vile and inhumane. Do we want more of these people? ' Paul Ojanen, 61 Duluth, Minnesota ' If you narrow selection over time, no matter what, you select for other unknown traits. As usual they are applying their very narrow field ... algorithms and computability ... to a process that needs randomness for long-term success. Eventually they'll succeed in what they want, a 'purebred' lineage, but with all types of unforeseen problems, just like purebred dogs. ' (Camille Cohen/For The Washington Post) Jann Becker, 70 St. Louis ' We chose to adopt in part because I have bipolar disorder and substance abuse, both of which run in my father's family, that I didn't wish to pass on. Choosing to bear only the embryo(s) without a known problem is, to me, the most ethical choice for people who know there's a hereditary disease in their family that would seriously impact a future child's life. If all the women in a given generation used that process for a disease like, say, Huntington's, could be eliminated for that family — but that means all of those women would need to accept their own test results and undergo an invasive medical procedure before becoming pregnant. ' Anca Vlasopolos, 76 Centerville, Massachusetts ' These extraordinarily ignorant people know nothing about genetics and the bell curve. Geniuses do not have genius children. People on the lower IQ scale may have a very intelligent child. But the white-supremacy myth driving these attempts is merely what it is=racism. ' Justin Wilson, 36 Silver Spring, Maryland ' I love it! Knew the idea/process would eventually become a thing. It's concerning that so many of you think this is bad. Is it just envy? Irrational fear of technology? Something that could lead to a healthier population is undeniably a good thing in my book. ' Judy Pelowski, 66 Red Oak, Texas ' At my age, I'm not having any babies. However, I believe there's something to be said for natural selection. They've said for years that mongrel dogs are healthier than purebreds. … Are you really going to eliminate anyone who doesn't have a high enough intelligence level or might one day die? What if, during their lifespan, the low-intelligence individual can see things others can't or has strength the others don't have and saves someone? What if the unhealthy child is a genius? Who's going to do all the work that the designer babies can't do? Testing for terrible deformities or diseases that would not allow the child to make it more than a short time after birth, and only in a very pained way, yes. Testing that saves a person a life of pain, yes. Vanity testing? Are you sure you want to go that way? ' Chris Strohbeck, 67 Reston, Virginia ' I find it ironic that these so-called risk takers are so obsessed with eliminating any and all risk, whether perceived or not, whether scientifically supported or not. I am not in their age cohort, but it occurs to me that one of the most concerning aspects of advanced technology (AI topping the list) accelerated by young adults is that these entrepreneurs don't have enough perspective. It's not always true that age comes with wisdom, but time spent living a life does broaden your experience base, sharpen your decision-making, and develop your moral thinking. ' Francesca A., 78 Oakland, California ' I became pregnant in 1986 after six years of trying various methods because of infertility. Because of my infertility, I was advised to wait and have an amnio rather than have a chorionic villus sampler test due to the risk of aborting the fetus in the latter test. Well, it turned out that my amniocentesis revealed our baby had the Trisomy 18 defect. Would pre-pregnancy genetic testing have indicated this as a possible risk? Obviously, in our case, finances would've been a factor, but I would never want to have to go through a late-term therapeutic abortion at almost 7 months again. ' Mary Redmond, 62 Philadelphia ' Prospective parents are 'rolling the dice,' like it or not. That's axiomatic from a genuinely scientific (Darwinian) perspective. These experts are con artists who add to the uncertainty. An old-fashioned fortune teller or astrologer might provide more 'value.' '
France 24
a day ago
- Business
- France 24
Germany: Top EU officials gather to discuss stricter migration measures
01:58 18/07/2025 European interior ministers gather for meeting on migration policy in Germany 18/07/2025 Trump threatens to sue WSJ over story on alleged letter to Epstein 18/07/2025 Russian deputies back fines for clicking on 'extremist' content 18/07/2025 World-first IVF trial reduces risk of babies inheriting diseases 18/07/2025 France hand over last two military bases in Senegal 18/07/2025 Golf: 19 players competed for first North Pole Championship title 18/07/2025 Argentina: 'Milei never promised major public investment — he promised cuts' 18/07/2025 Argentina: Thousands protest public health cuts in Buenos Aires
Yahoo
a day ago
- Health
- Yahoo
Scientists use DNA from three people to protect babies from rare disease
LONDON - A pioneering IVF technique combining DNA from three people to protect a baby from a rare genetic disease has been used in Britain, leading to a healthy cohort of eight babies with no sign of serious disease, scientists said Wednesday. Four girls and four boys, including one set of twins, were born healthy after scientists used the treatment to prevent mothers with mutations in their mitochondrial DNA from transmitting the condition to their children, scientists at Newcastle University in northern England said in a statement Wednesday. Subscribe to The Post Most newsletter for the most important and interesting stories from The Washington Post. The authors say it represents the first study into an entire cohort of babies and paves the way for further research on their health outcomes, as well as improved medical techniques for that specific treatment - which is granted approval in the United Kingdom on a case-by-case basis. Mitochondria are commonly known as the 'powerhouse of the cell' and produce energy required for major parts of the body to function. However, small mutations in mitochondrial DNA can affect tissues with high-energy demands such as the heart, muscle and brain, causing devastating disease and, in some cases, death. Mitochondrial DNA is inherited from the mother, and although males can be affected, they do not transmit the disease, researchers said. About 1 in 5,000 babies are born worldwide each year with mutations that can cause the disease, researchers said. Now, scientists have detailed how an IVF technique called pronuclear transfer has been used to combine the DNA of three people to reduce the risk of mitochondrial disease being passed down the generations, in accompanying studies published in the New England Journal of Medicine on Wednesday. The technique uses 99.9 percent of the DNA from a man and woman, with another 0.1 percent from a second woman's donor egg. It works by transplanting the nuclear genome of an egg from the mother with the condition - which contains genes essential for individual characteristics like hair color and height - to an egg donated by an unaffected woman that has had its nuclear genome removed, researchers said. The resulting embryo inherits nuclear DNA from its two parents, but the mitochondrial DNA comes from the donated egg, researchers said. The treatment was offered to certain women at very high risk of passing on serious mitochondrial disease, in accordance with U.K. regulations that assess each application for the procedure on a case-by-case basis. The eight infants - who range in age from newborn to over 2 years old - were assessed to be healthy, meeting developmental milestones and reported levels of mitochondrial disease-causing mutations that were undetectable or at levels unlikely to cause disease, the Newcastle University statement said. Three of the babies had levels of disease-causing mitochondrial DNA mutations of up to 20 percent, which is still below the 80 percent threshold for clinical disease, it added. Doug Turnbull, a neurologist at Newcastle University who co-wrote the study, said it was the first to document a 'cohort' of children who had received the treatment. He said it is the result of an extremely cautious approach by scientists and regulators that has been more than two decades in the making. 'People have used very similar techniques, but nobody's quite used this particular technique,' he told The Washington Post in a phone interview Thursday. 'It's just absolutely critical when you're doing a new technique to be cautious and to make sure … it's as safe and efficient as possible.' The procedure has also raised concern from some, including religious groups, about its ethics and the fear that it could open the door to further genetic modification. Peter Thompson, chief executive of the Human Fertilization and Embryology Authority, which regulates the process in Britain, said that only people with a 'very high risk' of passing on a serious mitochondrial disease are eligible for the treatment and that every application is assessed individually. As of July 1, 35 patients have been granted approval by U.K. authorities to proceed with the treatment since it was first licensed in 2017. 'These robust but flexible regulatory processes allow the technique to be used safely for the purposes that Parliament agreed in 2015,' Thompson said in a statement in response to Wednesday's news. Scientists have cautiously welcomed the findings, while stressing the importance of long-term monitoring and raising the prospect of whether the procedure offers advantages over embryo screening for genetic disease. Others have raised the issue of cost in the long-term project that is supported by Britain's National Health Service and medical charity the Wellcome Trust, among other groups. Mary Herbert, who is professor of reproductive biology at Newcastle University and lead author of the research paper, said 'the findings give grounds for optimism' but further research is needed to 'bridge the gap' between reducing risk of mitochondrial disease and preventing it. Turnbull said the team is also looking to improve medical techniques and follow up with the children involved for as long as possible to track their health outcomes. He said researchers are offering health assessments for five years, but it 'would be lovely to be able to follow them up much longer.' Joanna Poulton, a professor in mitochondrial genetics at the University of Oxford, who was not involved in the research, said 'time will tell' whether the treatment results in 'dramatic clinical advance.' The births come amid a wider boom in genomic sequencing and IVF start-ups that have sparked a wider debate about the ethics and science behind embryo screening and genetic preselection. In the United States, those undertaking IVF typically test for rare genetic disorders stemming from a single gene mutation, such as cystic fibrosis, or chromosomal abnormalities such as Down syndrome. The use of donor mitochondria, however, is not permitted under U.S. regulations. In Britain, the creation of babies using DNA from three people was first made legal in 2015, hailed for its ability to prevent serious disease being passed on. Related Content Democrats try a new tone: Less scripted, more cursing, Trumpier insults An asylum seeker abandons her claim and leaves Trump's America He may have stopped Trump's would-be assassin. Now he's telling his story.
