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
UK
Prince Andrew insisted on ‘gag order’ to stop allegations spoiling Queen’s Platinum Jubilee, memoir claims
Prince Andrew insisted his accuser, Virginia Giuffre, sign a one-year gag order – to prevent details of her allegations tarnishing the late Queen’s platinum jubilee, her memoirs have claimed.
Andrew relinquished his Duke of York title and remaining honours on Friday evening.
It came after discussions with King Charles, in consultation with the Prince of Wales, both of whom wanted to bring an end to the long-lasting scandal.
But, according to The Telegraph, Ms Giuffre’s book, which is due out on Tuesday, is focusing further attention on the sexual assault allegations and the prince’s friendship with paedophile Jeffrey Epstein, which led to the royal’s downfall.
She tells how Andrew’s “disastrous” Newsnight interview with Emily Maitlis was like an “injection of jet fuel” for her legal team, and it raised the possibility of “subpoenaing” his ex-wife Sarah Ferguson, and daughters Princess Beatrice and Princess Eugenie and drawing them into the legal case.
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Prince Andrew’s ’embarrassed’ Royals ‘for years’
The Telegraph also reports Ms Giuffre’s claims that she got “more out of” Andrew than a reported £12m payout and $2m (around £1.4m) donation to her charity because she had “an acknowledgement that I and many other women had been victimised and a tacit pledge to never deny it again”.
The former duke paid to settle a civil sexual assault case with Ms Giuffre in 2022, despite insisting he had never met her.
Ms Giuffre alleged she was forced to have sex with the prince when she was 17, after being trafficked by Epstein. Andrew continues to vehemently deny her allegations.
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Prince Andrew: A timeline of events
Queen Elizabeth II was celebrating her platinum jubilee in 2022 – the first British monarch to reach the milestone – as the civil case against her son was gathering pace.
It was settled nine days after she reached the 70th anniversary of her accession.
According to the Telegraph, Ms Giuffre, who died in April, reveals in her book: “I agreed to a one-year gag order, which seemed important to the prince because it ensured that his mother’s platinum jubilee would not be tarnished any more than it already had been.”
Parades, processions, concerts and street parties were held across the UK in celebration of the Platinum Jubilee. Pic: PA
In January 2022, a US judge ruled the civil case against Andrew could go ahead, and the Queen went on to strip him of his honorary military roles, with the prince also giving up his HRH style.
‘Devastating’ interview
His 2019 Newsnight interview, which he hoped would clear his name, backfired when he said he “did not regret” his friendship with convicted paedophile Epstein, who trafficked Ms Giuffre.
Prince Andrew and Virginia Giuffre (then Roberts) in 2001 – a picture the prince claimed had been doctored. Pic: Shutterstock
Andrew also said he had “no recollection” of ever meeting Ms Giuffre and added he could not have had sex with her in March 2001 because he was at Pizza Express with his daughter Beatrice on the day in question.
Ms Giuffre, whose book is called Nobody’s Girl: A Memoir of Surviving Abuse and Fighting for Justice, wrote, according to The Telegraph: “As devastating as this interview was for Prince Andrew, for my legal team it was like an injection of jet fuel.
“Its contents would not only help us build an ironclad case against the prince but also open the door to potentially subpoenaing his ex-wife, Sarah Ferguson, and their daughters, Princesses Beatrice and Eugenie.”
‘Amazed he was stupid enough’
She also told how Andrew had “stonewalled” her legal team for months before settlement discussions began moving very quickly when his deposition was scheduled for March 2022.
Ms Giuffre also wrote she was “amazed” that a member of the royal family would be “stupid enough” to appear in public with the convicted paedophile, after a photo of the pair walking in New York emerged.
Andrew, who remains a prince and continues to live in the Crown Estate property Royal Lodge, said on Friday the “continued accusations about me distract from the work of His Majesty and the royal family”.
He insisted he was putting his “family and country first” and would stop using “my title or the honours which have been conferred upon me”.
It’s not the first seismic statement I’ve had to deal with from the Royal Family late into the evening.
But what I have learnt from past experience is that when they do come in this way, it’s because the decision has been made to act now and act fast.
Which inevitably has us all wondering, why now?
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Prince Andrew: ‘Too much of a distraction’
The latest stories about Prince Andrew and his email to Jeffrey Epstein were again a sign of just how close he’d been to the convicted paedophile, and an extract released from the late Virginia Giuffre’s book was heartbreaking and excruciatingly seedy.
And yes, the full book is released on Tuesday.
But in some ways, we have heard a lot of these lurid details before, albeit allegations that Prince Andrew denies.
Which is why it feels like this time, the family had just had enough.
It’s framed as a personal statement from Andrew, but the involvement of his relatives could not be any clearer: “In discussion with the King, and my immediate and wider family,” he writes, followed up by, “with His Majesty’s agreement, we feel I must now go a step further”.
It has always been hard to get a full picture of how much the King has engaged in the problems with his brother.
Prince Andrew speaks with King Charles as they leave Westminster Cathedral Pic: Reuters
Speak to those who know the family well and they’ll tell you our current monarch “doesn’t like confrontation”, just like Queen Elizabeth II.
And while there has always remained “a warm familial feeling between the two brothers” which we’ve seen through Andrew’s appearance at family events, it is “tempered by the King’s responsibilities as head of state to be entirely separate from the perceived, real or alleged activities of the Duke of York”.
In the end, as head of the institution, and not as his brother, the King would have had to lead the discussions about the Andrew problem, but I suspect with heavy involvement from his eldest son and wife.
William, only in recent weeks, has told us there will be change when he becomes monarch, his advisors stressing he isn’t afraid to question why the Royal Family continues to do things in a certain way.
His very visible unease at standing next to Prince Andrew at the Duchess of Kent’s funeral showed us how uncomfortable he felt about his uncle being there at such a public moment.
His involvement in those discussions behind the scenes and making sure the institution was seen to be taking action against Andrew is likely to have been considerable.
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A timeline of allegations against Andrew
I know that Queen Camilla is also a quiet but hugely powerful influence behind palace walls.
She is her husband’s listening ear, sounding board, but also not afraid to tell him when she believes there needs to be change.
Her own work to break taboos around sexual violence and encourage survivors to speak out must have made it even more difficult for her to read the stories about Andrew’s links to Epstein, and the sexual allegations against her brother-in-law, even though he has always vehemently denied them.
And then there are those closest to the Prince.
You have to have sympathy with his daughters, Princess Beatrice and Princess Eugenie. Did they tell their father that he needed to do something for their sake to try and shut down the noise?
His ex-wife, Sarah Ferguson, has also been burned in recent weeks by her association with Epstein – a spectre who, despite his death, has continued to haunt the royal family.
So what of Prince Andrew? How will this impact him?
Any sense he might have a chance at returning to some kind of public life has truly evaporated. We wait to see if, with time, he is again allowed to appear at least for family occasions.
I’ve always been told “he is robust and self-contained and always has been”.
Interpret that how you will – arrogance that he could ride it out, or a very strongly-held conviction that he has never done anything wrong?
Either way, he clearly believes he has been unfairly punished by the court of public opinion.
One thing a source did tell me is that there is a sense he’s never really needed the affirmation of his family.
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Author: Andrew has no public future
He may not need their emotional support, but in the end, we have again seen how no member of the family is bigger than the institution.
Protecting the reputation of “the firm” has to come first.
Prince Andrew may feel that he has done the right thing, even done his family a favour, by personally relinquishing the use of his titles and honours, but this, in the end, was not just his choice.
No longer to be known as HRH or the Duke of York, he is now Prince Andrew only – ultimately forced to fall on his sword by his own family.
Prince Andrew has announced he is giving up his royal titles, including the Duke of York.
The decision is understood to have been made in close consultation with King Charles and other members of the Royal Family.
Prince Andrew said continued accusations against him were distracting from the King’s work.
He had been accused by Virginia Giuffre, who died in April, of sexual assault. He denies this.
Which titles is he giving up?
Prince Andrew is giving up his Duke of York title. Sky News understands this will be immediate.
He will also give up his knighthood as a Knight Grand Cross of the Royal Victorian Order (GCVO) and his Garter role as a Royal Knight Companion of the Most Noble Order of the Garter.
He will retain the dukedom, which can only be removed by an Act of Parliament, but will not use it.
Prince Andrew will also remain a prince, as the son of Queen Elizabeth II.
Virginia Giuffre had accused Prince Andrew of sexually assaulting her before her death. Pic: AP
Why is this happening now?
Ms Giuffre, who was one of billionaire paedophile Jeffrey Epstein’s victims, alleged Prince Andrew sexually assaulted her on three occasions when she was 17, and sued him in 2021.
In her posthumous memoir Nobody’s Girl, due to be published on Tuesday, she alleged he was “entitled” and “believed having sex with me was his birthright”.
Prince Andrew has always denied the allegations.
He has also always claimed that a well-known image of them together was doctored. Before her death, which her family said was by suicide, the case was settled outside of court for a sum believed to have been around £12m.
Ms Giuffre’s posthumous memoir goes on sale a week after an email emerged showing Andrew told Epstein “we are in this together”.
The email was reportedly sent three months after he said he had stopped contact with the convicted sex offender.
Flight logs released by a US committee from Epstein’s estate name Prince Andrew. Pic: House Committee on Oversight and Government
On Friday evening, the US House Oversight Committee also released documents from Epstein’s estate showing “Prince Andrew” listed as a passenger on the financier’s private jet – the so-called Lolita Express – from Luton to Edinburgh in 2006, alongside Ghislaine Maxwell.
He was also listed on another flight to West Palm Beach, Florida, in 2000.
The flight logs have been reported on for years but the release may have added to pressure.
“The situation has become untenable and intolerable, and this week in particular, the tipping point had been reached,” said royal correspondent Laura Bundock.
It is understood that the changes will take effect immediately.
The Giuffre family has called for the King to go further and “remove the title of Prince”.
Prince Andrew’s decision to relinquish his titles also comes following increased pressure over his relationship with an alleged Chinese spy.
The move will not impact the Princesses, including Princess Beatrice, here.
Will this affect his ex-wife and daughters?
Sky News understands that Andrew will continue to live at the Windsor Estate at the Royal Lodge. His ex-wife, Sarah Ferguson, will also remain living at the Royal Lodge.
But for the second year running, he will not attend the Royal Family’s annual Christmas celebrations at Sandringham, it is understood.
Andrew’s ex-wife will also no longer use her Duchess of York title.
She was dropped by numerous charities last month after it emerged that she wrote to convicted sex offender Epstein, calling him a “supreme friend”, despite publicly disowning him in the media.
The decision over Andrew’s titles will not impact on the position of his daughters, Princess Beatrice and Princess Eugenie, it is understood.
Sky News royal correspondent Rhiannon Mills says the move may not stop the influx of negative stories about him.
She said: “This ends the questions on what more the monarch could do to show how the family felt about the accusations, the upset and the embarrassment caused.
“Will it stop the stories, the allegations and the interest in Prince Andrew? That is far less certain. But in what is the prince’s first public statement since that ill-fated Newsnight interview in 2019, it is striking that he signs it off by saying, ‘I vigorously deny the accusations against me’.”
Prince Andrew made the decision to give up his titles in close consultation with King Charles, it is understood. Pic: Reuters
What did Prince Andrew say in his statement?
In his statement, Prince Andrew said: “In discussion with The King, and my immediate and wider family, we have concluded the continued accusations about me distract from the work of His Majesty and the Royal Family.
“I have decided, as I always have, to put my duty to my family and country first. I stand by my decision five years ago to stand back from public life.
“With His Majesty’s agreement, we feel I must now go a step further. I will therefore no longer use my title or the honours which have been conferred upon me.
“As I have said previously, I vigorously deny the accusations against me.”
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.
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