Would you want to know if you’re likely to get cancer or dementia? Here’s what people who’ve had their results say
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 for 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.”
Professor Dame Sue Hill, chief scientific officer for England and the senior responsible officer for NHS genomics, said: “It can be daunting finding out whether or not you have a cancer risk gene but I’d encourage anyone who has concerns to discuss them with their GP.
“Finding out early means people can get the support they need from the NHS including genetic counselling, further testing, surveillance or, crucially, treatment as early as possible.
“Genomic testing is offered for 3,200 rare diseases and more than 200 cancer indications, including for cancer predisposition genes.
“The NHS carries out over 800,000 tests in England every year, with eligibility criteria updated annually to reflect the latest scientific evidence.”
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
The UK economy showed strong growth in the first three months of the year, according to official figures.
Gross domestic product (GDP) – the standard measure of an economy’s value – grew 0.7% in the first quarter of 2025, the Office for National Statistics said.
The rise is better than expected. An increase of just 0.6% was anticipated by economists polled by the Reuters news agency.
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It’s significantly better than the three months previous, in which a slight economic expansion of just 0.1% was reported for the final quarter of 2024.
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The ONS also said there was a small amount of growth last month, as GDP expanded 0.2% in March, which similarly beat expectations.
No growth at all had been forecast for the month.
How did the economy grow?
A large contribution to high GDP growth was an increase in output in the production sector, which rose 1.1%, driven by manufacturing and a 4% increase in water supply, the ONS said.
Also working to push up the GDP figure was 0.7% growth in the biggest part of the UK economy – the services industry.
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‘Here’s the concern with GDP figures’
Wholesale, retail and computer programming services all performed well in the quarter, as did car leasing and advertising, the ONS said.
It shows the economy was resilient, as the country headed into the global trade war sparked by President Trump’s so-called ‘liberation day’ tariff announcement on 2 April.
Welcome political news, for now
The data is welcome news for a government who have identified growing the economy as its number one priority.
Chancellor Rachel Reeves is taking the figures as a political win, saying the UK economy has grown faster than the US, Canada, France, Italy and Germany.
“Today’s growth figures show the strength and potential of the UK economy, ” she said.
“Up against a backdrop of global uncertainty, we are making the right choices now in the national interest.”
Listen to The World with Richard Engel and Yalda Hakim every Wednesday
Such GDP numbers may not continue into April as businesses and consumers were hit with a raft of bill rises, and Mr Trump’s tariffs fired the starting gun on a global trade war.
Last month, water, energy and council tax bills rose across the country while employers faced higher wage costs from the rise in their national insurance contributions and the minimum wage.
But above-inflation wage growth and fading consumer caution could continue to boost the economy.
UK
Assisted dying law ‘unworkable, unaffordable and naive’ says partnership of UK’s leading social care groups
A partnership of the country’s leading social care and end of life organisations has told Sky News of their deep frustration at being excluded from important discussions around the assisted dying debate – describing the proposed change to the law as “unworkable, unaffordable and naive”.
The Coalition of Frontline Care for People Nearing the End of Life is worried about the impact of introducing assisted dying will have on their three million-strong workforce, which they say is on the frontline for delivering care to terminally ill adults.
The partnership includes The Gold Standards Framework Charity (GSF), National Care Forum (NCF), British Geriatric Society (BGS), Care England (CE) and the Community Hospital Association.
It submitted evidence at the committee stage of the Terminally Ill Adults (End of Life) Bill, but was not called to give evidence
Professor Martin Vernon, consultant geriatrician and spokesperson for ethics and law at the British Geriatric Society, told Sky News: “This is a huge problem for us.
“The majority of people this law will impact on are going to be older people with complex needs, and there has been virtually no engagement in the consultation process around this proposed legislation.”
Professor Martin Vernon says the majority affected by the bill will be older with complex needs
Professor Vernon and his coalition colleagues are especially concerned about sick and vulnerable adults being pressured into making choices.
“We then may see, increasingly, older people with life-limiting diagnoses like dementia, like frailty, feeling the need to opt for assisted dying or indeed feeling coerced either by their circumstances or societally,” he added.
“This may place a heavy burden on some individuals to choose assisted dying when, actually, the creation of better alternatives – supportive care, and palliative care to enable them to have a dignified and comfortable last few years of life should be the way to go.”
Caroline Southgate, founder and managing director of home care company Doris Jones, told Sky News there was simply not enough information about the impact assisted dying would have on her staff.
‘The way that the bill is presented doesn’t give us enough information,’ Caroline Southgate says
“I think we are concerned that we don’t have enough clarity about how we would train staff, how we support people if they make that decision,” she said.
“At the moment, the way that the bill is presented doesn’t give us enough information to know how we would deal with those issues.
“If someone chooses this route, all I need to know is what’s my role, where are my boundaries?”
Mrs Southgate is also worried about her staff being accused of coercion. Because of the nature of their work, home carers build up a strong bond with the people they tend to, often seeing them multiple times a day.
And sometimes, they might be the only contact their service users have.
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“I think we’ve got lots and lots of experience of being in homes with people, dealing with families, who trust us to look after the person who needs care and support at home,” she added.
“I need to know that we would be insured and protected should a family decide that one of our staff was accused of coercing someone, or the other way around, talking someone out of a situation.
“We really need a lot more information to make that safe for us and to make sure that our staff are really well supported.”
Katy Betz works for Mrs Southgate. She is a trained nurse originally from Germany but has lived and worked as a carer in England for over twenty years.
Kate loves what she does, but echoes the same concerns expressed by her employer: Assisted dying could change the relationship she has with her service users.
Driving along Southend’s seafront, she explains there is little else she and her care colleagues talk about these days.
Katy Betz tells Sky News the debate on assisted dying is all she and her colleagues talk about
“It is important”, she says. “Even within my friendship group, everyone has got a different opinion, a strong opinion actually.
Katy says she needs more detail: “More training, safeguarding – what do we do? Where do we go? Who needs to be informed about the client’s decision?
“You are there to make their life, and their end of life, bearable and as good as possible. I can’t explain how I deal with it, but I think you just have to be born to deal with it.”
Katy is on her way to see John and Brenda Barber for one of their daily visits. Brenda is 85 and John is 90.
John took Brenda on their date to a jive dance in Southend.
He was twenty years old and had just returned from army service in Gibraltar. Brenda was just sixteen.
They have been inseparable ever since.
John’s arthritis makes every day tasks almost impossible, and he says if he did not have a carer like Katy, his life would be intolerable.
Paul Barber said his life would be intolerable without Katy Betz
He says: “It’s becoming increasingly difficult with different parts of my body. My wife and I are together and that’s what we want. We would never want to be separated.”
There’s a pause while he reflects on that thought. “That’s despite the bickering,” he says before breaking into a mischievous laugh.
The bond that is shared between Katy, John and Brenda is clear to see. They are worried that this might change irreversibly if the assisted dying law is passed.
The Terminally Ill Adults (End of Life) Bill returns to the House of Commons on Friday, where it will face greater scrutiny.
Earlier this week, two Royal Colleges, Physicians and Psychiatrists, withdrew support for the bill, saying it was “not fit for purpose”.
But campaigners in favour of assisted dying have told Sky News the bill includes more protections and safeguards for all dying people than any other jurisdiction where the choice is legal.
Sarah Wootton, chief executive for Dignity in Dying, said: “MPs voted by a clear majority to progress Kim Leadbeater’s Bill in November because they recognised that the blanket ban on assisted dying is failing dying people and their families.
“Every year, dying people are forced to endure unbearable pain, despite good care, travel overseas to die alone, or take matters into their own hands, often dying violent and lonely deaths without support.
“This Bill – already hailed as the strongest in the world – has been strengthened even further during committee stage, with amendments accepted to involve a range of skilled professionals in every application, specific training requirements around coercion, and that assisted dying can only be discussed within the context of all end of life options.”
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