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Saturday, 23 August 2014

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Talks must start soon over future of Cumbria DNA bank

From 2012, thousands of west Cumbrian-born children will have a pretty big decision to make as they blow out the candles on their 16th birthday cakes.

Professor John Burn photo
Professor John Burn

It won’t be A-levels versus vocational courses, or Ibiza versus Magaluf. They’ll need to decide whether to give scientists permission to keep their DNA and personal data for medical research.

The pioneering scheme – the North Cumbria Community genetics Project (NCCGP) – harvested samples from the umbilical cords of babies born at the West Cumberland Hospital between 1996 and 2003.

Based at the British Nuclear Fuels (BNFL) and Newcastle University backed Geoffrey Schofield Laboratories at the Westlakes Science and Technology Park in Whitehaven, the scheme also kept personal data on file too.

Between 80 and 90 per cent of mothers who gave birth at the hospital gave the samples.

And fewer, around 60 per cent, filled out questionnaires giving personal information such as their names, addresses, occupational histories, smoking and drinking habits and similar information relating to the father of the child.

It was heralded as a groundbreaking exercise, with the potential to make real waves in the research community and headway in understanding links between genes and childhood disease.

But this July, Westlakes Scientific Consulting went into administration and the plugs were pulled on the freezers that had held some of the samples.

At the time, the business was a subsidiary of the University of Central Lancashire (UCLan). Uni bosses blamed a downturn in sales and ballooning pension liabilities for its demise.

Although, with the publicity surrounding the launch of the scheme well over a decade in the past, the DNA bank had perhaps slid from wider public memory.

Until, that is, anti-nuclear campaigners, Cumbrians Opposed to a Radioactive Environment (CORE), raised questions over the future of the NCCGP samples at a scrutiny meeting last month.

CORE organiser Janine Allis-Smith claimed a pledge to inform mothers about the work being carried out using the project samples had never materialised.

Where are they being held? What will happen to them next?

And, perhaps most importantly, who will be able to access the DNA and accompanying personal data?

Mrs Allis-Smith told a meeting of the environmental health sub-committee of the West Cumbria Sites Stakeholders group: “The whole project has been a catastrophe of promises that have never been kept.”

These children are now between 14 and seven-years-old. Some will be in Cumbrian schools gearing up for GCSE studies, some may have moved out of the county or overseas. Statistically, around 40 of them are likely to have died before their fifth birthday.

The News & Star has learnt that now, the samples taken at birth from the umbilical cords of these Cumbrian-born youngsters lie frozen in a Newcastle University storage facility.

Some had always been stored there, but since the collapse of Westlakes Scientific Consulting, all are now in the Newcastle bio-bank.

Only authorised personnel are able to access the bio-bank, using swipe cards to gain entry.

The personal data is kept in a separate place at the university, accessible by a different group of people wielding their swipe cards. The data is also password protected.

Back when it all began, the hoard collectively made history as the first DNA bank of its kind in Europe. It remains one of the only such banks in the UK and is a very valuable resource that would cost many millions to replicate.

As such, the research community is loathe to part with it now.

John Burn, professor of clinical genetics at the Newcastle University, has been involved in the project since the beginning.

“We are at a crossroads,” he said.

“We’ve been discussing what to do next. We need to decide what we, as a research community, along with Cumbria, do with these samples.”

These big decisions have been at the forefront of Professor Burn’s mind for some time.

Because, according to the law, the minute the donor children become sweet 16s, new consent must be sought in order to keep the data accompanying the samples. Or else, with every passing birthday, the data must be destroyed.

This, according to Professor Burn, will seriously devalue the future use of the DNA bank.

For one thing, it would mean that findings could not be explored in terms of social demographics.

“It would be a shame,” he said.

The NCCP’s beauty, for researchers, is that it offers samples from a broad base. This helps avoid bias in testing results.

“If we did a study into the causes of ingrowing toenails, we would need to go to surgeons and take people who have had surgery for ingrowing toenails,” said Professor Burn.

“It’s a biased sample because it would be people who have had severe ingrowing toenails and those who have had the means to have surgery.

“If you have an entire population available, you can compare with people who have not had ingrowing toenails.”

As time goes by, the DNA bank increases in value – as the children behind the samples turn into adults, insights can be found into genetic links to adult diseases too.

The future, then, presents a logistical problem for Professor Burn and the team behind the project.

Not least because the addresses of the participants may not remain the same. Tracing these teenagers and gathering their consent is a massive undertaking – and one that will need a similarly massive amount of cash to carry out.

Further public consultation could be another aspect of the exercise.

“We will need to go back and get another grant,” said professor Burn.

Cash was at the root of campaigner’s objections to the project, at the beginning at least.

The fact that BNFL funding was used to set up the scheme was deeply disturbing to members of CORE. There was, at one stage, talk of carrying out radiation-linked research work on the samples. And the fact that many senior research staff working at the Westlakes facility at the time were ex-BNFL, caused unrest too.

Professor Burn admits the DNA bank would not exist were it not for the BNFL money.

“They paid for the extraction,” he said. “Which was a very expensive process.”

Although what this cost is unclear.

“We don’t actually know, because it was done by their staff, we did not have a grant as such.

“It was in [BNFL’S] interests to let us do this. It was good for local medical research and could be of value if there were claims made at a later date.”

These “claims” would potentially concern any issues surrounding radiation and disease – although according to Professor Burn, none have ever been raised in the lifetime of the NCCGP.

Professor Burn and others have always insisted the research would be independent and findings, whatever they were, would be published.

Indeed, a study by Sara Brown, a dermatologist at Newcastle University’s Centre for Life, was published in 2008.

It found a genetic link to the causes of the dry skin condition eczema.

This research paved the way for developing new, effective ways of treating eczema.

Studies have also looked at the role of genetic and nutritional factors on the growth of a baby in the womb. Currently the project is helping researchers examine whether there may be a genetic indicator which increases the risk of premature birth, though Professor Burn won’t be drawn on this research at the moment. But why weren’t families kept regularly informed of developments regarding their samples and personal data?

“We don’t have people’s current addresses,” said Professor Burn. “We had no means of contacting them. So we can’t send people individual newsletters.

“There are no secrets, nothing is being hidden away.”

The issue of consent has also raised questions. One study, by Erica Haimes and Michael Whong-Barr of the Newcastle University's department of sociology and social policy, explored the ethical issues at the heart of the NCCGP.

It investigated women’s perceptions of their reasons for donating to the project and their reasons for refusing too.

As part of the study, women were interviewed face to face or over the phone. A draft seen by the News & Star includes statements of altruism from the donating women such as “I just think if you don’t have medical research then you don’t move forward”.

Several of those who chose not to donate cited a lack of control over the samples.One said “maybe it’s being used for something you’re not aware of” and another described the idea as “spooky”.

According to the study paper, some mothers had difficulty remembering they had donated at all, suggesting it may have been hard for some to remember what samples were taken and for what purpose during antenatal care.

Is it possible that some mothers have forgotten about donating all those years ago? Or were never entirely sure about what they were donating in the first place?

Professor Burn is keen to stress there is “nothing sinister” about the project and “clear consent” has always been obtained.

The West Cumbrian Research Ethics Committee approved the project and questionnaire at the outset and the samples are now kept under Human Tissue Authority guidelines.

Any researchers wishing to use the samples must first apply to the local ethic committee in Cumbria.

Commercial companies wanting to make diagnostic tests would not be excluded from applying. Though Professor Burn is keen to point out the NCCGP is not used as “a way of making money” – though the costs to the university of retrieving the samples for testing are reimbursed.

Professor Burn is also keen to stress personal data can only be accessed by police by court order.

And “no more than once or twice” have donors have requested their samples and data to be removed from the NCCGP.

“People then and now consider the samples to be in safe hands,” added Professor Burn.

“The NCCGP is important because it demonstrates that it can be done, with the support of the local population.

“If we go back to the community, tell them what we’ve done and tell them we’d like to keep the samples, I expect there would be fairly strong support.”

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