Double vision: The twins who are helping scientists to discover more than 400 novel genes associated with over 30 diseases

Six hundred papers, 12,000 participants – and a research team that began as just two people. Paul Cahalan on how TwinsUK may be helping the future of medicine

One twin remarked it was a nice change to wear the same clothes as the other after a lifetime spent trying to look different. Another told a story about having the same illness as her twin which lasted for the same duration – despite the pair being on different continents and unaware the other was ill.

But after the six sets of twins who came together for today’s TwinsUK’s “coming of age” celebrations had traded ice-breaking anecdotes, talk turned to the pleasure they have felt in giving to a greater cause.

They are among 6,000 sets of twins who have donated their time and bodies to the Department of Twin Research (DTR) at King’s College, London, to help what the professor heading up the unit describes as “an unprecedented two decades” of research.

From diabetes to arthritis, short-sightedness to cancer, the research has allowed scientists to discover more than 400 novel genes associated with more than 30 diseases. Today, the unit, Based at St Thomas’ Hospital, London, was celebrating the fruits of that 21 years of genetic research which has unravelled answers to all manner of health conditions and helped develop drugs to treat them.

Those advances have allowed doctors to start to unravel the secrets of epigenetics – the “switches” which make genes develop into a disease – with the hope that one day we will be able to “turn off” cancerous genes.

“It is a great feeling, to know that you are helping others by developing research,” says Janese Samuels, 53, from Tooting, south London, who has been part of the DTR programme for 15 years. “Some people give their bodies to medical research when they die, we get to do it when we are alive.”

Hazel Green from West Chiltington, West Sussex, says the DTR is like a family with added benefits.

“You have complete piece of mind. By definition you are constantly tested and these results go to our GP,” she says, “but it’s for everyone, it’s just they can use us to get the results.”

Professor Tim Spector, director of TwinsUK at King’s College London, has been working on the project since the beginning in 1992 when he and a staff of two – there are now 55 – tried to get 400 twins to be part of a study into arthritis.

“This is a huge milestone for us and represents a coming of age landmark. We have published over 600 scientific papers using the data we have collected,” he says. “TwinsUK is one of the largest twin registries in the world. The participation and commitment of the twins over the years has made a huge difference to our scientific knowledge of many common diseases.”

The unit has come a long way from those early days when twins would fill in questionnaires to help researchers study conditions like osteoporosis.

“When we started a lot of these things were not fashionable science. Everyone thought [the conditions] were due to old age and they were inevitable,” he says. “But we showed these things were due in part to genetics and we paid them more attention ... it helped re-focus doctors’ minds on common age-related problems.”

Buoyed by early success, and funded by The Wellcome Trust and the National Institute for Health Research (NIHR) Biomedical Research Centre, the unit grew and strengthened which, Professor Spector says, eventually allowed the advent of genome-wide association studies that mapped the whole DNA of twins to identify genes influencing the risk of disease.

As a direct result of this kind of work there are now four different anti-leukaemia drugs on the market that work epigenetically.

“Twins are perfect for studying epigenetics as we can clearly see that being born with the same genes does not mean they experience the same health throughout their lives,” Professor Spector says. “Why does one twin develop diabetes or heart disease and the other does not for example.”

The department has more than 300 twins who have breast cancer, and 30 pairs of twins have already been studied where one had breast cancer and the other didn’t – even though both had a predisposition to it. “We are looking at why something happened, perhaps through lifestyle, that allowed this switch to happen,” he says. “The idea is if we can detail changes five-years before cancer we can do something about it as epigenomes are reversible and can be turned off.”

The DTR will continue its birthday celebrations tomorrow when hundreds of twins will take part in scientific experiments for research into pain, short-sightedness, hearing loss, skin ageing and even telepathy.

“I am extremely excited about what the future of genetics discovery will hold over the next 21 years, as we move onto an area of personalised medicine,” Professor Spector says. “I can envisage a time when a person’s DNA will be taken at birth and measured repeatedly for epigenetic changes so medicines can be tailored to that individual.”

Twin power

Margaret Micklewright and Rosemary Case, from Ruislip, aged 80

Margaret: “We started 21 years ago, and were numbers 61 and 62. We’ve had all sorts of tests.”

Hazel Green from West Sussex, and Christine Dafter from Kent, aged 68

Hazel “All the girls from the south east go to London together and we make a day of it.”

Margaret Turton  from Eastbourne and Barbara Pilgrim from Redhill, aged 54

Barbara “It’s nice  to feel you are  contributing to  research.”

Janet Morgan and Janese Samuels, from Tooting, aged 53

Janese “We will keep helping until we are old and can’t do it anymore”

Rebecca and Zoe Fearnley, 44, from Hackney, aged 44

Zoe “It makes you feel like you have contributed to  something, you are part of it.”

Gemma Hall and Nadine Osman, from Streatham, aged 28

Gemma “It gave us a greater understanding of ourselves”

Voices
There will be a chance to bid for a rare example of the SAS Diary, collated by a former member of the regiment in the aftermath of World War II but only published – in a limited run of just 5,000 – in 2011
charity appealTime is running out to secure your favourite lot as our auction closes at 2pm today
News
people
News
Elton John and David Furnish exchange marriage vows
peopleSinger posts pictures of nuptials throughout the day
News
File: James Woods attends the 52nd New York Film Festival at Walter Reade Theater on September 27, 2014
peopleActor was tweeting in wake of NYPD police shooting
PROMOTED VIDEO
Life and Style
ebookNow available in paperback
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Sport
Martin Skrtel heads in the dramatic equaliser
SPORTLiverpool vs Arsenal match report: Bandaged Martin Skrtel heads home in the 97th-minute
Arts and Entertainment
The Lord of the Rings and The Hobbit director Peter Jackson with his star on the Hollywood Walk of Fame
film
News
people
News
Billie Whitelaw was best known for her close collaboration with playwright Samuel Beckett, here performing in a Beckett Trilogy at The Riverside Studios, Hammersmith
people'Omen' star was best known for stage work with Samuel Beckett
Arts and Entertainment
Mark Wright has won The Apprentice 2014
tvThe Apprentice 2014 final
News
i100
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Manufacturing Manager

    £35000 - £38000 per annum: Recruitment Genius: This is a rare opportunity for ...

    Recruitment Genius: Conveyancing Fee Earner / Technical Support

    £20000 - £30000 per annum: Recruitment Genius: An experienced Fee Earner/Techn...

    Recruitment Genius: Receptionist

    Negotiable: Recruitment Genius: This law firm is seeking a happy, helpful and ...

    The Jenrick Group: Production Supervisor

    £26000 - £29000 per annum + Holidays & Pension: The Jenrick Group: Production ...

    Day In a Page

    Surrounded by high-rise flats is a little house filled with Lebanon’s history - clocks, rifles, frogmen’s uniforms and colonial helmets

    Clocks, rifles, swords, frogmen’s uniforms

    Surrounded by high-rise flats is a little house filled with Lebanon’s history
    Return to Gaza: Four months on, the wounds left by Israel's bombardment have not yet healed

    Four months after the bombardment, Gaza’s wounds are yet to heal

    Kim Sengupta is reunited with a man whose plight mirrors the suffering of the Palestinian people
    Gastric surgery: Is it really the answer to the UK's obesity epidemic?

    Is gastric surgery really the answer to the UK's obesity epidemic?

    Critics argue that it’s crazy to operate on healthy people just to stop them eating
    Homeless Veterans appeal: Christmas charity auction Part 2 - now LIVE

    Homeless Veterans appeal: Christmas charity auction

    Bid on original art, or trips of a lifetime to Africa or the 'Corrie' set, and help Homeless Veterans
    Pantomime rings the changes to welcome autistic theatre-goers

    Autism-friendly theatre

    Pantomime leads the pack in quest to welcome all
    The week Hollywood got scared and had to grow up a bit

    The week Hollywood got scared and had to grow up a bit

    Sony suffered a chorus of disapproval after it withdrew 'The Interview', but it's not too late for it to take a stand, says Joan Smith
    From Widow Twankey to Mother Goose, how do the men who play panto dames get themselves ready for the performance of a lifetime?

    Panto dames: before and after

    From Widow Twankey to Mother Goose, how do the men who play panto dames get themselves ready for the performance of a lifetime?
    Thirties murder mystery novel is surprise runaway Christmas hit

    Thirties murder mystery novel is surprise runaway Christmas hit

    Booksellers say readers are turning away from dark modern thrillers and back to the golden age of crime writing
    Anne-Marie Huby: 'Charities deserve the best,' says founder of JustGiving

    Anne-Marie Huby: 'Charities deserve the best'

    Ten million of us have used the JustGiving website to donate to good causes. Its co-founder says that being dynamic is as important as being kind
    The botanist who hunts for giant trees at Kew Gardens

    The man who hunts giants

    A Kew Gardens botanist has found 25 new large tree species - and he's sure there are more out there
    The 12 ways of Christmas: Spare a thought for those who will be working to keep others safe during the festive season

    The 12 ways of Christmas

    We speak to a dozen people who will be working to keep others safe, happy and healthy over the holidays
    Birdwatching men have a lot in common with their feathered friends, new study shows

    The male exhibits strange behaviour

    A new study shows that birdwatching men have a lot in common with their feathered friends...
    Diaries of Evelyn Waugh, Virginia Woolf and Noël Coward reveal how they coped with the December blues

    Famous diaries: Christmas week in history

    Noël Coward parties into the night, Alan Clark bemoans the cost of servants, Evelyn Waugh ponders his drinking…
    From noble to narky, the fall of the open letter

    From noble to narky, the fall of the open letter

    The great tradition of St Paul and Zola reached its nadir with a hungry worker's rant to Russell Brand, says DJ Taylor
    A Christmas ghost story by Alison Moore: A prodigal daughter has a breakthrough

    A Christmas ghost story by Alison Moore

    The story was published earlier this month in 'Poor Souls' Light: Seven Curious Tales'