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.
Read more:
Rise in cancer rates in young people
Spit test for prostate cancer ‘could save thousands’
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.”
Keep up with all the latest news from the UK and around the world by following Sky News
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
The UK-US trade deal has been signed and is “done”, US President Donald Trump has said as he met Sir Keir Starmer at the G7 summit.
The US president told reporters in Canada: “We signed it, and it’s done. It’s a fair deal for both. It’ll produce a lot of jobs, a lot of income.”
Sir Keir said the document “implements” the deal to cut tariffs on cars and aerospace, describing it as a “really important agreement”.
“So this is a very good day for both of our countries – a real sign of strength,” the prime minister added.
Mr Trump added that the UK was “very well protected” against any future tariffs, saying: “You know why? Because I like them”.
However, he did not say whether levies on British steel exports to the US would be set to 0%, saying “we’re gonna let you have that information in a little while”.
Mr Trump also praised Sir Keir as a “great” prime minister, adding: “We’ve been talking about this deal for six years, and he’s done what they haven’t been able to do.”
He added: “We’re very longtime partners and allies and friends and we’ve become friends in a short period of time.
“He’s slightly more liberal than me to put it mildly… but we get along.”
Sir Keir added that “we make it work”.
As the pair exited a mountain lodge in the Canadian Rockies where the summit is being held, Mr Trump held up a physical copy of the trade agreement to show reporters.
Several leaves of paper fell from the binding, and Sir Keir quickly stooped to pick them up, saying: “A very important document.”
Sir Keir Starmer picks up paper from the UK-US trade deal after Donald Trump dropped it at the G7 summit. Pic: Reuters
The US president also appeared to mistakenly refer to a “trade agreement with the European Union” at one point as he stood alongside the British prime minister.
Mr Trump announced his “Liberation Day” tariffs on countries in April. At the time, he announced 10% “reciprocal” rates on all UK exports – as well as separately announced 25% levies on cars and steel.
Read more:
G7 summit ‘all about the Donald’ – analysis
Scrambled G7 agenda as leaders race to de-escalate Israel-Iran conflict
In a joint televised phone call in May, Sir Keir and Mr Trump announced the UK and US had agreed on a trade deal – but added the details were being finalised.
Ahead of the G7 summit, the prime minister said he would meet Mr Trump for “one-on-one” talks, and added the agreement “really matters for the vital sectors that are safeguarded under our deal, and we’ve got to implement that”.
Whitehall officials tried to convince Michael Gove to go to court to cover up the grooming scandal in 2011, Sky News can reveal.
Dominic Cummings, who was working for Lord Gove at the time, has told Sky News that officials in the Department for Education (DfE) wanted to help efforts by Rotherham Council to stop a national newspaper from exposing the scandal.
In an interview with Sky News, Mr Cummings said that officials wanted a “total cover-up”.
Politics latest: Grooming gangs findings unveiled
The revelation shines a light on the institutional reluctance of some key officials in central government to publicly highlight the grooming gang scandal.
In 2011, Rotherham Council approached the Department for Education asking for help following inquiries by The Times. The paper’s then chief reporter, the late Andrew Norfolk, was asking about sexual abuse and trafficking of children in Rotherham.
The council went to Lord Gove’s Department for Education for help. Officials considered the request and then recommended to Lord Gove’s office that the minister back a judicial review which might, if successful, stop The Times publishing the story.
Lord Gove rejected the request on the advice of Mr Cummings. Sources have independently confirmed Mr Cummings’ account.
Education Secretary Michael Gove in 2011. Pic: PA
Mr Cummings told Sky News: “Officials came to me in the Department of Education and said: ‘There’s this Times journalist who wants to write the story about these gangs. The local authority wants to judicially review it and stop The Times publishing the story’.
“So I went to Michael Gove and said: ‘This council is trying to actually stop this and they’re going to use judicial review. You should tell the council that far from siding with the council to stop The Times you will write to the judge and hand over a whole bunch of documents and actually blow up the council’s JR (judicial review).’
“Some officials wanted a total cover-up and were on the side of the council…
“They wanted to help the local council do the cover-up and stop The Times’ reporting, but other officials, including in the DfE private office, said this is completely outrageous and we should blow it up. Gove did, the judicial review got blown up, Norfolk stories ran.”
Please use Chrome browser for a more accessible video player
Grooming gangs victim speaks out
The judicial review wanted by officials would have asked a judge to decide about the lawfulness of The Times’ publication plans and the consequences that would flow from this information entering the public domain.
A second source told Sky News that the advice from officials was to side with Rotherham Council and its attempts to stop publication of details it did not want in the public domain.
One of the motivations cited for stopping publication would be to prevent the identities of abused children entering the public domain.
There was also a fear that publication could set back the existing attempts to halt the scandal, although incidents of abuse continued for many years after these cases.
Sources suggested that there is also a natural risk aversion amongst officials to publicity of this sort.
Read more on grooming gangs:
What we do and don’t know from the data
A timeline of the scandal
Mr Cummings, who ran the Vote Leave Brexit campaign and was Boris Johnson’s right-hand man in Downing Street, has long pushed for a national inquiry into grooming gangs to expose failures at the heart of government.
He said the inquiry, announced today, “will be a total s**tshow for Whitehall because it will reveal how much Whitehall worked to try and cover up the whole thing.”
He also described Mr Johnson, with whom he has a long-standing animus, as a “moron’ for saying that money spent on inquiries into historic child sexual abuse had been “spaffed up the wall”.
Asked by Sky News political correspondent Liz Bates why he had not pushed for a public inquiry himself when he worked in Number 10 in 2019-20, Mr Cummings said Brexit and then COVID had taken precedence.
“There are a million things that I wanted to do but in 2019 we were dealing with the constitutional crisis,” he said.
The Department for Education and Rotherham Council have been approached for comment.
Flawed data has been used repeatedly to dismiss claims about “Asian grooming gangs”, Baroness Louise Casey has said in a new report, as she called for a new national inquiry.
The government has accepted her recommendations to introduce compulsory collection of ethnicity and nationality data for all suspects in grooming cases, and for a review of police records to launch new criminal investigations into historic child sexual exploitation cases.
Politics latest: Yvette Cooper reveals details of grooming gangs report
Baroness Louise Casey carried out the review. Pic: PA
The crossbench peer has produced an audit of sexual abuse carried out by grooming gangs in England and Wales, after she was asked by the prime minister to review new and existing data, including the ethnicity and demographics of these gangs.
In her report, she has warned authorities that children need to be seen “as children” and called for a tightening of the laws around the age of consent so that any penetrative sexual activity with a child under 16 is classified as rape. This is “to reduce uncertainty which adults can exploit to avoid or reduce the punishments that should be imposed for their crimes”, she added.
Baroness Casey said: “Despite the age of consent being 16, we have found too many examples of child sexual exploitation criminal cases being dropped or downgraded from rape to lesser charges where a 13 to 15-year-old had been ‘in love with’ or ‘had consented to’ sex with the perpetrator.”
Please use Chrome browser for a more accessible video player
Grooming gangs victim speaks out
The peer has called for a nationwide probe into the exploitation of children by gangs of men.
She has not recommended another over-arching inquiry of the kind conducted by Professor Alexis Jay, and suggests the national probe should be time-limited.
The national inquiry will direct local investigations and hold institutions to account for past failures.
Home Secretary Yvette Cooper said the inquiry’s “purpose is to challenge what the audit describes as continued denial, resistance and legal wrangling among local agencies”.
On the issue of ethnicity, Baroness Casey said police data was not sufficient to draw conclusions as it had been “shied away from”, and is still not recorded for two-thirds of perpetrators.
‘Flawed data’
However, having examined local data in three police force areas, she found “disproportionate numbers of men from Asian ethnic backgrounds amongst suspects for group-based child sexual exploitation, as well as in the significant number of perpetrators of Asian ethnicity identified in local reviews and high-profile child sexual exploitation prosecutions across the country, to at least warrant further examination”.
She added: “Despite reviews, reports and inquiries raising questions about men from Asian or Pakistani backgrounds grooming and sexually exploiting young white girls, the system has consistently failed to fully acknowledge this or collect accurate data so it can be examined effectively.
“Instead, flawed data is used repeatedly to dismiss claims about ‘Asian grooming gangs’ as sensationalised, biased or untrue.
“This does a disservice to victims and indeed all law-abiding people in Asian communities and plays into the hands of those who want to exploit it to sow division.”
Read more:
Officials tried to cover up grooming scandal, says Cummings
Why many victims welcome national inquiry into grooming gangs
Grooming gangs scandal timeline
Please use Chrome browser for a more accessible video player
From January: Grooming gangs: What happened?
The baroness hit out at the failure of policing data and intelligence for having multiple systems which do not communicate with each other.
She also criticised “an ambivalent attitude to adolescent girls both in society and in the culture of many organisations”, too often judging them as adults.
‘Deep-rooted failure’
Responding to Baroness Casey’s review, Ms Yvette Cooper told the House of Commons: “The findings of her audit are damning.
“At its heart, she identifies a deep-rooted failure to treat children as children. A continued failure to protect children and teenage girls from rape, from exploitation, and serious violence.
She added: “Baroness Casey found ‘blindness, ignorance, prejudice, defensiveness and even good but misdirected intentions’ all played a part in this collective failure.”
Ms Cooper said she will take immediate action on all 12 recommendations from the report, adding: “We cannot afford more wasted years repeating the same mistakes or shouting at each other across this House rather than delivering real change.”
Home Secretary Yvette Cooper responded to the report. Pic: PA
Conservative leader Kemi Badenoch said: “After months of pressure, the prime minister has finally accepted our calls for a full statutory national inquiry into the grooming gangs.
“We must remember that this is not a victory for politicians, especially the ones like the home secretary, who had to be dragged to this position, or the prime minister. This is a victory for the survivors who have been calling for this for years.”
Ms Badenoch added: “The prime minister’s handling of this scandal is an extraordinary failure of leadership. His judgement has once again been found wanting.
“Since he became prime minister, he and the home secretary dismissed calls for an inquiry because they did not want to cause a stir.
“They accused those of us demanding justice for the victims of this scandal as, and I quote, ‘jumping on a far right bandwagon’, a claim the prime minister’s official spokesman restated this weekend – shameful.”
The government has promised new laws to protect children and support victims so they “stop being blamed for the crimes committed against them”.
It is also launching new police operations and a new national inquiry to direct local investigations and hold institutions to account for past failures.
There will also be new ethnicity data and research “so we face up to the facts on exploitation and abuse,” the home secretary said.
-
Sports3 years ago‘Storybook stuff’: Inside the night Bryce Harper sent the Phillies to the World Series
-
Sports1 year agoStory injured on diving stop, exits Red Sox game
-
Sports2 years agoGame 1 of WS least-watched in recorded history
-
Sports2 years agoMLB Rank 2023: Ranking baseball’s top 100 players
-
Sports4 years ago
Team Europe easily wins 4th straight Laver Cup
-
Environment2 years agoJapan and South Korea have a lot at stake in a free and open South China Sea
-
Sports2 years agoButton battles heat exhaustion in NASCAR debut
-
Environment2 years agoGame-changing Lectric XPedition launched as affordable electric cargo bike