Ethnic gaps in genomic medicine affecting health outcomes: Study
Diverse data key to develop accurate AI-based disease prediction tools, say experts
By Pramod ThomasJun 13, 2024
BLACK, Asian, and ethnic minority communities are “significantly underrepresented” in precision and genomic medicine research, leading to adverse health outcomes, a study has revealed.
Inadequate ethnic representation in datasets also hinders the development of AI-based risk prediction tools used to estimate the likelihood of diseases or conditions, a report by the University of Nottingham and the NHS Race and Health Observatory said.
The absence of data from ethnic groups “compromises the effectiveness of these tests” across different ethnic populations, the study released last Wednesday (5) said. Precision medicine uses datasets, such as individuals’ genomes or complete electronic health records, to customise medical care.
Genomics can help identify the causes of undiagnosed rare diseases, which helps families avoid prolonged hospital visits and unnecessary tests.
At the launch of the report, professor Habib Naqvi, chief executive, NHS Race and Health Observatory, called for intervention to address minority under-representation in research.
“Genomics and precision medicine are currently at the cutting edge of medical technology and promise a world in which treatments can be more targeted and effective,” he said.
“There is a risk, however, that these advances could leave behind those communities who already experience health inequalities. We know ethnic minorities are underrepresented in medical research and in genomic biobanks,” Naqvi added.
The review of ethnic inequities in genomics and precision medicine looked at 70 policy and guidance documents, from 2017 and 2022. It pointed out that well-documented historical abuses of minority groups by medical institutions led to a loss of trust in research, clinical trial participation, and vaccine uptake.
Manpreet Bains
Researchers said people from minority communities avoided taking part in research due to past violations against them, while others failed to understand how or why their involvement in genetic research could benefit their families, communities, and others.
British Pakistani Sadia Haqnawaz, who lost her baby daughter in 2010 to genetic disorder Autosomal Recessive Polycystic Kidney Disease (ARPKD), said, “For me, It is vital that parents whose babies receive poor diagnoses due to genetic anomalies resulting from consanguineous marriages understand the risk factors involved. Potential, tragic consequences can be avoided if more parents are aware of genetic testing and public health information is available, translatable and accessible to communities.”
“Despite the stigma, cultural, and religious taboos, this is a subject that needs to be addressed and countered against a lot of misinformation around what genetic testing entails from genetic modifications and micro-chipping. Often there is more faith in god than genetic testing and science,” said Haqnawaz, who now works supporting and raising awareness of the risks involved with inter marriages within families.
The review made some key recommendations – such as engaging various groups, including the public, patients, healthcare workers, government officials, as well as authorities in discussions about genetic medicine services; rebuilding trust within communities; ensuring patients and healthcare professionals have access to interpreters proficient in complex medical language; and establishing clear rules and regulations regarding access to genetic data.
Habib Naqvi
“To promote diverse participation in research, there needs to be a change in researchers’ attitudes and behaviours. Research approval groups should mandate the assessment of researchers’ plans for involving ethnic minority communities,” the report said.
“Genetic medicine education should be improved for healthcare professionals. Non-healthcare workers involved in healthcare decision-making, like social workers, chaplains, and community leaders, should receive training on genetic medicine,” the report added.
“Additionally, cultural awareness training should be offered to healthcare workers to enhance patient understanding. Healthcare workers also require specific training to improve the collection of information about a person’s characteristics, including ethnicity.”
Dr Manpreet Bains, the lead author of the report and an associate professor at the University of Nottingham, said precision medicine seeks to deepen our understanding of how differences in genes and other factors impact our health.
“Inequities in access to genomic medicine services are currently evident. It’s crucial to consider the risks to communities experiencing ethnic health disparities. Evaluation and monitoring should be integrated into systems, with clear timelines and measures established from the outset,” she added.
“The report underscored the importance of a diverse workforce, yet inequalities in the treatment of healthcare staff remain a significant issue. Additionally, a lack of understanding and bias among healthcare professionals likely affects clinical practice.”
The report urged collaboration with the National Institute for Clinical Excellence (NICE) to develop healthcare guidelines that consider differences among populations regarding health and disability.
The NHS Race Observatory is currently collaborating with NHS England on an invitation to tender to examine ethnic health disparities within the Genomic Medicine Service.
Spring 2025 was England’s driest and warmest in over 130 years
Reservoirs across England only 77% full, compared to 93% average
Environment Agency increases monitoring and drought planning
North-west England officially declared in drought
Water conservation measures stepped up ahead of summer
The UK government has increased efforts to manage water resources after confirming that England experienced its driest and warmest spring since 1893. The Environment Agency (EA) reported that reservoirs were on average only 77% full, significantly lower than the usual 93% for this time of year.
The announcement came after a National Drought Group meeting on Thursday, which reviewed the impact of continued dry weather on crops, canal navigation, and river flows. Poor grass growth and dry soil conditions were noted as threats to food production and livestock feed.
North-west enters drought as conditions persist
The EA confirmed that a drought has now been declared in north-west England, despite rainfall at the beginning of June. Other regions including Yorkshire, the East and West Midlands, and northeast England are also experiencing prolonged dry spells.
Helen Wakeham, EA director of water and chair of the drought group, said:
“It’s been the driest spring since 1893, and we need to be prepared for more summer droughts as our climate changes.”
She urged the public to use water responsibly, emphasising the importance of conservation throughout the summer.
Water firms outline conservation strategies
Water companies presented updated drought plans during the meeting, including accelerated leak repairs and improved customer communication. The Environment Agency said some may need to introduce further restrictions in the absence of substantial rainfall.
While no national measures are in place yet, local curbs are being prepared. A Yorkshire water hosepipe ban is among the restrictions under consideration if conditions worsen in the coming weeks.
The EA has begun conducting more compliance checks on high-usage industries and supporting farmers in managing their water needs.
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Following Thatcher’s third general election victory in 1987, Tebbit stepped back from frontline politics to care for his wife. (Photo: Getty Images)
Norman Tebbit, a close ally of former British prime minister Margaret Thatcher and a former Conservative Party cabinet minister, has died at the age of 94. His son William confirmed the news on Tuesday.
"At 11:15 pm on 7th July, 2025, Lord Tebbit died peacefully at home aged 94," William Tebbit said in a statement.
Tebbit was seriously injured in 1984 when the Irish Republican Army (IRA) bombed the Grand Hotel in Brighton during a Conservative Party conference. The attack was aimed at assassinating Thatcher. Tebbit had to be pulled out from the rubble, and his wife Margaret was left paralysed from the neck down as a result of the explosion.
Following Thatcher’s third general election victory in 1987, Tebbit stepped back from frontline politics to care for his wife.
Between 1981 and 1987, Tebbit held several key positions in government, including employment secretary, trade and industry secretary, and chairman of the Conservative Party. He was known for his direct approach during a period marked by high unemployment and widespread unrest.
"I grew up in the 1930s with an unemployed father," he said. "He didn't riot. He got on his bike and looked for work and he kept looking until he found it," Tebbit added.
The statement was widely quoted and paraphrased by critics as telling people to "get on your bike", and was used by the left to depict him as lacking compassion.
The satirical TV series Spitting Image portrayed him as a tough, leather-clad figure with metal chains, a depiction Tebbit reportedly found amusing.
Tory Party leader Kemi Badenoch described Tebbit as "an icon in British politics" and praised his "enormous intellect and profound sense of duty to his country".
She said Tebbit had played a key role in Thatcher's administration, especially in confronting the influence of trade unions.
"But to many of us it was the stoicism and courage he showed in the face of terrorism" and his dedication to caring for his wife that showed he was "first and foremost a family man who always held true to his principles", she added.
(With inputs from agencies)
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Floral tributes left by members of the public are seen following the fatal knife attack on three young girls in July in Southport.
A PUBLIC inquiry begins on Tuesday into the murders of three young girls at a Taylor Swift-themed dance event in Southport last year.
The inquiry will examine whether the attack could have been prevented and how future incidents might be avoided.
The attack took place during a summer holiday event in northern England in July, when teenager Axel Rudakubana, who had a history of violence and an interest in genocide, carried out a knife attack. Three girls were killed and 10 others injured.
The incident led to widespread shock and was followed by several days of rioting across the country.
Rudakubana, who was 17 at the time, was sentenced in January to a minimum of 52 years in prison. He pleaded guilty just before his trial was due to begin. Prosecutors said there was no clear motive, describing the attack as driven by a desire to commit mass murder.
Following his conviction, prime minister Keir Starmer ordered an inquiry after it emerged during the trial that Rudakubana had been referred to a counter-radicalisation programme three times, but no further action had been taken.
He had also been previously arrested while carrying a knife and had admitted to possessing an al Qaeda training manual as well as making the poison ricin.
Adrian Fulford, who is leading the inquiry, said in a statement: "My focus throughout this inquiry will be a thorough and forensic investigation of all the circumstances surrounding the attack and the events leading up to it."
The first part of the inquiry will examine Rudakubana’s background and his contact with public bodies. A second phase will explore the wider issue of children becoming involved in violence, which has become an increasing concern for UK authorities.
Lawyers representing the families of the three girls – Bebe King, six, Elsie Dot Stancombe, seven, and Alice Dasilva Aguiar, nine – said they hoped the inquiry would help bring out the facts.
"We know that nothing the inquiry reveals, or subsequently recommends will change the unimaginable loss felt by the families of Elsie, Alice and Bebe, but we all now have a responsibility to ensure that something like this never happens again," they said in a statement.
(With inputs from agencies)
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Starmer is facing a Labour backbench revolt over plans to reform special needs support in schools without guaranteeing existing legal rights. (Photo: Getty Images)
KEIR STARMER is facing a backlash from Labour MPs over plans to reform special educational needs and disabilities (SEND) support, after ministers stopped short of guaranteeing legal rights for parents.
Education Secretary Bridget Phillipson said the government was committed to reforming the current system, which costs £12 billion a year. However, she did not confirm if legally enforceable rights, such as those provided by education, health and care plans (EHCPs), would remain.
Early education minister Stephen Morgan told Times Radio: “We want to make sure that every child gets the support that they need,” but did not rule out changes to current entitlements.
Senior Labour MPs told The Times the plans risk repeating mistakes from past welfare reforms. “We’re all in favour of reforming the system but that cannot be driven by saving money and taking support away from children,” one MP said.
The government’s proposals, expected in the autumn, focus on early intervention and better support in mainstream schools. Ministers say the aim is not to cut costs but to improve outcomes. They have pledged £750 million for new specialist facilities and over £1 billion for high needs budgets.
Campaigners say EHCPs remain essential for securing support. Celebrities and groups including the National Autistic Society warned in The Guardian: “Without statutory support, underpinned by necessary extra resources for schools, it’s extremely unlikely that ministers will achieve their aim.”
Phillipson told the BBC the current system was “too adversarial” and “too bureaucratic,” adding: “We need to just take a step back and think about how do we build a better system.”
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Londoners faced a wet and stormy start to the week
Heavy rain and thunderstorms drench London at the start of the week
Temperatures set to rise with highs of 31°C expected by Thursday
Heatwave could be declared by Friday if warm conditions persist
Night-time temperatures to remain high, increasing discomfort
UV and pollen levels forecast to be very high across the south
Thunderstorms soak London before summer heat returns
Londoners faced a wet and stormy start to the week as heavy rain and overnight thunderstorms swept through the capital. Monday morning saw widespread downpours, leaving commuters reaching for umbrellas and Wimbledon ticket hopefuls queuing in ponchos.
The unsettled conditions followed a burst of thunderstorms on Sunday afternoon and continued into the early hours of Monday, prompting caution across the city. The Met Office has not issued a formal weather warning for thunderstorms, but conditions remain unstable.
Temperatures expected to climb through the week
According to the Met Office, Monday will gradually clear, with sunny intervals forecast later in the day. Temperatures are expected to peak at around 23°C, before rising steadily through the week.
By Wednesday, temperatures could reach between 25°C and 28°C in parts of the country. However, for a heatwave to be officially declared, these thresholds must be met for three consecutive days.
Senior Met Office meteorologist Marco Petagna explained: “Although the temperature will be reaching the criteria, we probably won’t actually reach an official heatwave until around Friday.”
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Heatwave likely by Friday, with weekend highs in low 30s
The mercury is forecast to hit 30°C or above by Friday and Saturday, with some areas potentially reaching the low 30s. Conditions are also expected to become more humid towards the weekend, making nights increasingly uncomfortable as temperatures are not likely to fall below 15°C.
Petagna noted that while it will be hot, the UK is expected to avoid the extreme heat experienced in southern Europe, where parts of Spain and Portugal have seen temperatures soar into the mid-40s.
UV and pollen levels also rising
In addition to the heat, very high UV and pollen levels are expected across southern parts of the UK later in the week. The Met Office has advised the public to take precautions during peak hours of sunlight.
The long-term outlook remains uncertain, with some forecasts suggesting the heat may ease early next week, while others predict it could persist into the following weekend.