Would you want to know if your genes predisposed you to a disease – even if that disease would kill you?
Checking our bodies for unusual lumps and bumps has become a normal way of looking after our health.
But what about considering how our genes might predispose us to cancer or cognitive decline? Should we find out – even in cases where we are powerless to stop it?
It’s been more than a decade since the so-called “Angelina Jolie effect“.
In 2013, the actress announced she’d had a double mastectomy, having tested positive for faults in the BRCA1 gene, which gave her an 87% chance of developing breast cancer and a 50% chance of ovarian cancer. She later had her ovaries and fallopian tubes removed.
Jolie underwent what is called “predictive” genetic testing, whereby her significant family history qualified her for further investigations and then surgery to reduce her cancer risk.
Angelina Jolie in 2013 – the year she announced her mastectomy. Pic: AP
But while genetic testing is increasingly becoming a feature for those diagnosed with cancer, NHS predictive testing for “unaffected” family members is under pressure from ever-increasing demand.
“There’s a real log jam,” says Professor Gareth Evans, medical genetics consultant at Manchester Foundation Trust and professor of cancer epidemiology and medical genetics at the University of Manchester.
If you don’t have cancer but have significant family history and, like Jolie, are approaching the age your relatives were diagnosed or died, you are referred through the NHS genetics service – instead of your hospital’s oncology department, he adds.
“If you want to be tested and you’re unaffected, the NHS doesn’t have enough genetic counsellors to cope with the number of referrals coming in,” Professor Evans says.
‘Ticking time bombs’
Tracie Miles, from the gynaecological cancer research charity Eve Appeal, describes some predictive testing cases as “ticking time bombs”.
“For unaffected patients, with say three relatives with certain types of cancer, they will be referred for genetic testing in their early 50s,” says Ms Miles, who is associate director of nursing and midwifery at the NHS South West Genomic Medicine Service Alliance.
“They’re like a ticking time bomb for those cancers, but can they get tested now? No. They’ve got to wait a year.”
Emma Lorenz, 48, from London, says had her half-sister Carly Moosah not been turned away for NHS predictive testing in 2017, doctors may have caught both their cancers earlier and avoided her having a hysterectomy.
She was diagnosed with stage 4b ovarian cancer in July 2019, with her sister noticing a swelling under her own arm and being diagnosed with breast cancer a few months later in December.
“My sister tried to get tested on the NHS around three years before her diagnosis,” she tells Sky News.
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Carly’s mother and grandmother both died of breast cancer in their 50s, having been diagnosed in their 40s.
Eventually, private tests revealed they had both inherited faulty BRCA1 genes from their father, whose Ashkenazi Jewish heritage means a six-times greater risk of BRCA mutations than the general population.
Emma, who is now cancer-free after surgery and multiple rounds of therapy and drugs, says: “If my sister had been tested before, both our cancer stories could have been so very different.
“My late-stage diagnosis also took my choice of having children away.”
But despite being tested much later than they could have been, Emma still credits their tests with saving their lives.
Emma during her cancer treatment. Pic: Emma Lorenz
“Getting my BRCA diagnosis probably ultimately saved my sister’s life,” she says.
“And because I also tested positive for the BRCA gene, I was offered an incredible pill that I would not have had access to if I didn’t.
“So on the one hand, it was a very hard diagnosis because of what it meant for my family, but on the other, it was a good thing in terms of treatment.”
‘Some people would rather not know’
Predictive genetic testing is also available on the NHS for certain forms of dementia.
People who have a close relative with frontotemporal dementia, which has a proven genetic link, or several relatives with an early onset form of the disease qualify.
But with no cure for either, or various other neurological diseases such as Parkinson’s, the decision to get tested is much more complex.
“If you’ve got a cancer-causing change in the BRCA gene, you can have surgery or screenings, which reduce your chances of getting cancer,” says Dr Alisdair McNeill, NHS clinical genetics consultant and senior clinical lecturer in neurogenetics at the University of Sheffield.
“But there are currently no cures for genetic brain diseases like some rare forms of dementia, so the benefits and motivations for having that test are different to the situation of cancer running in families.”
He adds that a positive test result can allow people to make more informed choices about their futures, careers, or to undergo IVF treatment to help prevent faulty genes from being passed to children.
But he says: “There are some misconceptions that there are things people can do after their diagnosis – and we often have to correct them in the very sad absence of any treatment.”
The NHS says that while a predictive test result “may reduce any stress and anxiety that comes from not knowing”, “a positive result may cause permanent anxiety” and “some people would rather not know about their risk”.
Alzheimer’s result at 27
Jayde Greene, from Hertfordshire, decided to get tested for PSEN1 gene mutations, associated with familial early-onset Alzheimer’s disease, after her father, two uncles, and aunt were all diagnosed in their 40s.
She says that while she initially tried to keep her family history from her mind, the funeral of her father’s twin not long after the birth of her son Freddie in 2016 saw her get tested aged 27.
“That’s when I decided I had to know,” she tells Sky News. “So I could prepare and know how to live the rest of my life with my son.”
Pic: Jayde Green
Jayde’s seven-year-old son Freddie. Pic: Jayde Greene
She received a positive result – meaning she’s at high risk of the disease – and in the days afterwards, she says she had suicidal thoughts and attempted an overdose.
“The first time I was on my own I started thinking all manner of things – that I couldn’t bear to be the way my dad was and have my son look at me like that.
“That he wasn’t even a year old yet, that if I went now, he wouldn’t remember me, and it’d hurt less.”
But she changed her mind, she says, and is now preparing to tell her son about her result when he is a teenager, before she reaches the age her relatives started showing symptoms.
Jayde with her father Michael. Pic: Jayde Greene
“I heard my son crying and I stopped what I was doing,” she says.
“I’ve never thought that way again, but I want people to know that feeling that way is also normal.”
Now aged 34, she stresses that although she tries to remain “90% hopeful”, there are “still bad days”.
“Medicine is making leaps and bounds,” she says. “But I also keep feeling that it’s been seven years and there’s been nothing yet.
“So there are days when my hope is gone and I’m convinced at 42, like my dad, that’ll be it.”
Jayde’s father Michael (R) and his twin brother John. Pic: Jayde Greene
Not enough genetic counsellors
Genetic counsellors are experts who help assess people’s genetic risk and guide them through the process of testing. There are only around 300 of them in the UK.
Professor Evans says that without their scientific expertise and psychological support, many women risk “falling apart” after a positive test result for a cancer-related gene.
But with waits of six months or a year for people who don’t already have cancer, increasing numbers are either buying testing kits online or trying to get results through private labs, which offer little-to-no genetic counselling, according to the experts.
“There is published evidence that programmes that use raw data from ancestry tests are only 50% accurate,” Professor Evans warns. “So you could be wrongly told you have a genetic fault, or if there is a fault in your family, told you don’t have one.”
These people often try to re-enter the NHS, he adds, to find it will not accept their result, meaning their waiting time starts over.
Ultimately, the decision to get tested is a personal choice, which also depends on the condition being tested for.
Professor Evans, who developed the Manchester scoring system for cancer testing, stresses the importance of genetic counselling in either scenario.
“If you carry a faulty BRCA1 or 2, your risk of breast cancer can be as high as 80% – that’s a really considerable risk,” he says. “So it’s about preparing people for the level of risk they’re going to be at.
“But if you do test positive, there’s a lot we can do about it and we can really reduce your likelihood of dying from cancer.”
Testing is ‘scary’ but ‘knowledge is power’
Kellie Armer, 34, from Lancashire, is having a preventative double mastectomy this year after testing positive for a BRCA1 mutation at 26.
She was aware of her genetic cancer risk from around 18 but says she “wasn’t mentally ready” then to get tested.
Now, having had two children and run the London Marathon for charity Prevent Breast Cancer, she says: “At 18 I didn’t want to go down that road. I was a bit too scared still.
“But now it’s about a future with my kids. Being able to see my girls grow up outweighs any selfish thing like being career-driven and not wanting to take time off work – or worrying about being unattractive.”
Kellie on her wedding day. Pic: Kellie Armer
Emma says she found her BRCA test result distressing.
“I thought I handled my cancer as well as I possibly could,” she says. “But the thing that probably upset me the most was finding out I had the BRCA gene.
“The idea my family, including my niece and nephew aged four and six at the time, would have to think about this, or get sick in the future, deeply upset me.”
Her medical team has recommended she gets preventative breast surgery. Although she wants to wait a few more years, she knows she “can’t put it off indefinitely”.
“That knowledge is power – it’s the key that unlocks what our future health holds,” she says. “So for me, it’s better to know than hide your head in the sand and pretend it’s not happening.”
Although there is still no cure for Alzheimer’s, Jayde agrees.
“I’d never change my decision to know,” she says. “As much as it’s come with bad, it’s also come with a lot of good. If I could go back, I’d do it and find out again.”
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Experts are calling for the NHS thresholds for predictive genetic testing to be lowered and more public health campaigns around cancer and genetic risk.
Professor Evans says: “We should be expanding access to more unaffected people, but at the moment there just isn’t the manpower in NHS genetics to cope with more people coming in.”
Sky News has contacted NHS England for comment.
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK
Two firefighters and a member of the public have died in a large fire in Bicester, the fire service announced.
The firefighters died in the inferno at a former RAF base in Oxfordshire, which now hosts historic motoring and aviation centre Bicester Motion.
The local fire service was called to the scene at 6.39pm last night.
Chief Fire Officer Rob MacDougall said: “It is with a very heavy heart that we today report the loss of two of our firefighters. Families have been informed and are being supported.
“Our thoughts are with them at this most difficult of times and we ask for privacy to be respected.
“We cannot release any details at present but will provide further information as soon as we can.”
Two other firefighters sustained serious injuries and are currently being treated in hospital, Oxfordshire County Council said in a statement.
Footage shared on social media shows plumes of smoke billowing into the sky and flames swallowing the large building.
Clouds of smoke from the fire were billowing into the sky last night. Pic:@kajer87X
Two firefighters and one other person died in the fire, while two more firefighters were seriously injured. Pic: PA
Ten fire crews attended the incident, with four remaining at the scene. The fire is still ongoing, but it is considered under control.
Local residents were advised to remain indoors and keep their windows shut, but this advice has now been lifted.
Bicester Motion said in a statement it would be closed today and over the weekend.
The cause of the fire is not yet known.
This breaking news story is being updated and more details will be published shortly.
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UK
‘Toxic’ army unit charged with investigating sex crimes allowing abusers to ‘get away with it’ in own ranks, whistleblower says
More than a dozen women came forward to report a staff sergeant in the Royal Military Police (RMP) for sexual abuse, but he was allowed to resign from the army instead of face charges.
Warning: This article contains material some readers may find distressing
That’s the claim of a whistleblower who served as a sergeant in the RMP for over a decade and says she was one of the man’s victims.
Amy, not her real name, says a “toxic” culture in the military police means sexual predators in the army are “getting away with stuff that they shouldn’t be getting away with”.
It’s a rare insight into life inside the Royal Military Police, the corps charged with investigating crime in the army.
Amy described how the man who assaulted her would go into women’s rooms and sit on their beds. She says he used to force her to go out driving with him at night and talk about sex.
“He preyed on the young, new females that were in the unit,” she says.
“One day, I was out with my friends in town and he was on patrol… There were two of us that went over to speak to him and I had quite a low-cut top on.
“So he hooked his finger around my top and pulled my boob out”.
She recalls as she tried to stop him, “he grabbed my hand and put it on his penis”.
She claims there are other men in the RMP who’ve been accused of sexual offences, recalling hearing of five separate allegations of rape against male colleagues by female colleagues.
“If all of this sexual assault and bullying and rapes are going on within the military police, how can they then go out and investigate the wider army for doing the same things?” she says.
“It doesn’t work.”
Amy, a former RMP officer who alleges sexual abuse in the armed forces
‘He got away with it’
Looking back on her career in the army is difficult for Amy.
After leaving, she tried to settle back into life as a civilian with a new job and a young family to look after, but says she worried about bumping into former colleagues in the street.
“It’s taken me a long time to heal,” she says.
“I was very bitter towards my military career when I left, but I’ve had to sort of learn, build myself up again and remember the good times because they were really good times as well… I think it was just so bad at points.”
When she joined the RMP, she believed she would be part of a unit “representing how the rest of the soldiers should be conducting themselves”.
The reality, she says, was that she had become part of “one of the most toxic” corps in the army.
She recalls being told that the staff sergeant she had reported for sexual assault would be allowed to resign.
“They basically told me he’s not going to be charged, but will be leaving the military… doing him a favour,” she says.
“He got away with it all,” she adds. “He’s not going to lose his pension and whatever else he would have lost with a dishonourable discharge.
“He’s left without a criminal record… that’s not safe for civilians as well, because it’s not even on his record.”
‘They investigate themselves’
Earlier this year, an inquest into the suicide of 19-year-old Royal Artillery Gunner Jaysley Beck found she had been failed by the army after reporting sexual assault and harassment.
Since then, Sky News has reported claims of widespread abuse and growing calls for investigations into sexual offences to be removed from the RMP and instead carried out by civilian police.
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From March: Army women reveal alleged abuse
The Labour chair of the influential House of Commons Defence Committee is now urging the government to act.
Tan Dhesi told Sky News: “The system needs to change… incidents of sexual violence and sexual assault should be dealt with not by the Royal Military Police but by civilian police and civilian courts.
“I hope that the government will be making that substantial change in the very, very near future; in fact, they should do it ASAP.”
Tan Dhesi MP told Sky News that ‘the system needs to change… ASAP’
Since Gunner Beck’s death, a new tri-service complaints team has been announced by the Ministry of Defence (MoD).
The change will see bullying, harassment, discrimination related service complaints dealt with by a team outside the commands of the Royal Navy, British Army and Royal Air Force.
However, Amy believes investigations need to be done “completely separately from the military”.
“Otherwise it doesn’t work because friends will be investigating friends,” she says.
“I think there’s such a male-dominated space in the military still. Women have no chance… and it’s not fair because people are getting away with stuff that they shouldn’t be getting away with and allowed to continue doing it and ruining lives.”
She believes the entire system lacks accountability. “They investigate themselves,” she says, even down to how the RMP is regulated.
“The people that run that unit are RMP. They get posted in, do a few years and then get posted back out.”
‘I was told off for reporting it’
Katie, also not her real name, served in the army for over 20 years. She saw active service in Afghanistan and rose to the rank of Captain.
It was a distinguished career that was brought to a premature end by sexual abuse and whistleblowing.
Having taken the difficult decision to leave the army she now leads a secluded life and suffers poor mental health.
Katie (centre), who resigned from the armed forces after alleged sexual abuse, as a serving RMP officer
“I still struggle,” she says. “I’m still very wary of men. My relationship is strained.
“Everything seems like black and white now, like I live my life in black and white rather than full colour… As a person, it has changed my life forever.”
To begin with, she was in the same unit that Gunner Beck would join years later. She too experienced harassment and abuse, and says her line manager “laughed” when she reported it.
“I just felt like dehumanised, I felt like property, I didn’t feel like a person anymore,” she says.
“And so I would avoid people… I would hide in the garages, behind the tanks, in between the guns, just praying that these people hadn’t seen me and I might be able to escape them for that day.”
She moved to a different unit but says wherever she went, abuse was rife. After being groped by a higher-ranking colleague, she assumed her chain of command would escalate her report to the RMP.
Instead, she says she was “put in front of the Sergeant Major and told off”.
“I remember at the time saying I’d like to call the civilian police, and I was told that I wasn’t allowed to do that and I’d be disciplined if I tried to do that,” she said. “So I was so frightened.”
She stayed in the army, hoping to make a difference. As an officer, she began reporting abusers on behalf of younger victims.
“I kept this goal in my head of reaching a position one day where I could help other women,” she said. “When I got there, I realised that it was way more toxic than I could have ever imagined.
“The officer corps were actually the worst perpetrators of all because they brushed it under the carpet. There was a will and a need more to protect themselves or their friends. Or the reputation of the unit first and foremost.”
She believes changes made by the MoD since the death of Gunner Beck to remove the chain of command from sexual abuse investigations will make “little difference”, saying they’ll still be carried out by “the same people, but just under a new title”.
‘They should be held accountable’
An MoD spokesperson told Sky News that “unacceptable and criminal behaviour has absolutely no place in our Armed Forces”.
They added: “That is why this government is creating a new Tri-Service Complaints team to take the most serious complaints out of the chain of single service command for the first time, and has launched a new central taskforce on Violence Against Women and Girls to give this issue the attention it deserves.
“We are also establishing an independent Armed Forces Commissioner with the power to visit defence sites unannounced, and to investigate and report to parliament any welfare matters affecting service life.”
Amy believes the RMP is not fit for purpose.
“They have higher standards to uphold, yet they don’t uphold them within their own regiment, within their own lives, and then they’re expected to police and uphold those standards throughout the rest of the army,” she says.
“At the end of the day, they know the law and they should be held accountable for what they do.”
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK
Further moves to amend the controversial assisted dying bill are being made by MPs as it returns to the Commons for another day of emotionally charged debate.
After a marathon committee stage, when more than 500 amendments were debated, of which a third were agreed, the bill returns to the Commons with 130 amendments tabled.
As a result, the final and decisive votes on whether the bill clears the Commons and heads to the House of Lords are not expected until a further debate on 13 June.
The bill proposes allowing terminally ill adults with less than six months to live to receive medical assistance to die, with approval from two doctors and an expert panel.
Why is assisted dying so controversial – and where is it already legal?
In a historic vote last November, after impassioned arguments on both sides, MPs voted 330 to 275 in favour of Labour MP Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill.
Sir Keir Starmer voted in favour, while Deputy PM Angela Rayner, Foreign Secretary David Lammy, Health Secretary Wes Streeting and Justice Secretary Shabana Mahmood voted against.
The Conservatives were also split, with leader Kemi Badenoch voting in favour and former PM Rishi Sunak against. Reform UK leader Nigel Farage also voted against the bill.
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Assisted dying: Care sector ‘not being heard’
The PM, who is attending a summit in Albania, will be absent this time, but asked for his current opinion, told reporters: “My views have been consistent throughout.”
No fewer than 44 of the new amendments have been tabled by Ms Leadbeater herself, with government backing, a move that has been criticised by opponents of the bill.
Opponents also claim some wavering MPs are preparing to switch from voting in favour or abstaining to voting against and it only needs 28 supporters to change their mind to kill the bill.
Confirmed switchers from voting in favour to against include Tory MPs George Freeman and Andrew Snowden, Reform UK chief whip Lee Anderson and ex-Reform MP Rupert Lowe.
Labour MP Debbie Abrahams and Tory MP Charlie Dewhirst, who abstained previously, are now against and Labour’s Karl Turner, who voted in favour at second reading, is now abstaining.
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Assisted Dying Bill criticised
Mr Turner, a former barrister, told Sky News that an amendment to replace a high court judge with a panel of experts “weakens the bill” by removing judicial safeguards.
But in a boost for the bill’s supporters, Reform UK’s Runcorn and Helsby by-election winner Sarah Pochin, a former magistrate, announced she would vote in favour. Her predecessor, Labour’s Mike Amesbury, voted against.
“There are enough checks and balances in place within the legislation – with a panel of experts assessing each application to have an assisted death, made up of a senior lawyer, psychiatrist, and social worker,” said Ms Pochin, who is now the only Reform UK MP supporting the bill.
A Labour MP, Jack Abbott, who voted against in November, told Sky News he was now “more than likely” to vote for the bill, which was now in a much stronger position, he said.
Ms Leadbeater’s supporters strongly deny that the bill is at risk of collapse and are accusing its opponents of “unsubstantiated claims” and of “scare stories” that misrepresent what the bill proposes.
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Two people given months to live debate assisted dying
“There is a pretty transparent attempt by opponents of the bill to try to convince MPs that there’s a big shift away from support when that simply isn’t true,” an ally of Ms Leadbeater told Sky News.
Speaking in an LBC radio phone-in on the eve of the debate on the amendments, Ms Leadbeater said she understood her bill was “an emotive issue” and there was “a lot of passion about this subject”.
But she said: “I would be prepared to be involved in a compassionate end to someone’s life if that was of their choosing. And it’s always about choice. I have friends and family who are very clear that they would want this option for themselves.
“There is overwhelming public support for a change in the law and literally everywhere I go people will stop me and say thank you for putting this forward. I would want this choice.”
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Also ahead of the debate, health minister Stephen Kinnock and justice minister Sarah Sackman wrote to all MPs defending the government’s involvement in Ms Leadbeater’s amendments to her bill.
“The government remains neutral on the passage of the bill and on the principle of assisted dying, which we have always been clear is a decision for parliament,” they wrote.
“Government has a responsibility to ensure any legislation that passes through parliament is workable, effective and enforceable.
“As such, we have provided technical, drafting support to enable the sponsor to table amendments throughout the bill’s passage. We have advised the sponsor on amendments which we deem essential or highly likely to contribute to the workability of the bill.”
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