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Genetic screening for workers: A panacea or a Pandora's box?

With the price of full DNA testing plummeting, and in anticipation of personalised medicines fine-tuned to a patient's genetic make-up, one in four (24%) UK businesses say that they are likely to extend health screening into genetic testing as they strive to retain and attract top talent, a new survey has found.

UK businesses could soon offer employees a complete readout of their genetic blueprint, and hence unprecedented insight into their current and future health, but, amidst all the excitement, Baroness Helena Kennedy, QC, Vice President of the Patients Association and former Chair of the Human Genetics Committee, urges businesses to consider the wider implications, suggesting that genetic screening of employees may be more of a Pandora’s box than a panacea.

More than 600 UK business leaders were questioned for the Astellas Innovation DebateTM 2015, which on Thursday 29th January brings together a panel of world-renowned experts at The Royal Institution of Great Britain to discuss the implications of the revolutions in DNA and data for our health.1

Currently, one in four (24%) business leaders say they would offer full genetic screening to their employees –though this rises to nearly a third (29%) in the IT and banking sectors, where talent often seems in short supply.  But most employers (76%) the fear of legal repercussions is an inhibiting factor. 

Of employers who said that their business would be unlikely to offer genetic screening to employees, 43% said they might reconsider their view in the future if better legislation were introduced to protect the rights of employers (19%) and employees (24%).  16% said they would re-consider their view if the results of genetic testing could serve to reduce the cost of key person insurance, while a further 16% said that businesses would need access to advice on dealing with employees found to be at higher genetic risk of developing serious illness.  Only 5% said they might choose to offer genetic screening if their business could access genetic data from test results. 

A fifth of UK businesses admit that knowledge of an employee’s genetic risk of disease is likely to lead to discrimination

European legislation prohibits businesses from gaining access to their employees’ genetic data, and most businesses (72%) support this principle.  Despite that, one in five bosses (22%) admitted that an employee who revealed his/her greater genetic risk of serious illness would consequently also run a greater risk of redundancy and become less eligible for promotion.

Baroness Helena Kennedy, QC, a panellist at the Astellas Innovation Debate Vice President of the Patients Association, and former Chair of the Human Genetics Commission, where she successfully pushed for a moratorium on access to genetic records for insurance companies and persuaded the Government to make it a criminal offence to test DNA without an individual’s consent, commented, 

“Of course it’s a testament to mankind’s ingenuity that genetics and technology are combining to bring the prospect of personalised medicine much closer. But knowing the facts about our genes can also bring challenges. For example, our genetic information could be misused by insurers, who could over-interpret the information in our genes, wrongly suspect we are susceptible to some disease, and so not provide us with the kind of insurance we need.  Similarly, if an employee shared some genetic information with his or her boss that indicated a higher risk of, say, cancer or a neurological disease,– as this survey shows – the employee would be at higher risk of discrimination in the workplace in the form of redundancy or being passed over for promotion.  This in turn leaves the employer vulnerable to accusations of discrimination. And then, on a personal level, employees might well need professional support if they become distressed at the prospect of a disease that they might or might not develop.”

“Some US technology companies are offering employees DNA screening to identify the risk of cancers, and holding out the promise of personalised treatment based on their genetic make-up should they need it.  However, I would urge UK businesses not to follow suit – certainly not without thinking very carefully about the wider implications to them and their employees.  It is not just a matter of potential discrimination and lawsuits, but also of the health benefits to those being tested.  Of course, we all recognise the importance of screening people with a family history of certain diseases and rare genetic disorders – as the 100,000 Genomes Project is currently doing – but there is little benefit to widespread genetic testing if it can’t tell you when – or even if – you will develop the disease.”

Ken Jones, President & CEO of Astellas Pharma EMEA, sponsors and organisers of the Astellas Innovation Debate, added, “Astellas is widely recognised as an employer of choice in the pharmaceutical sector. We offer extensive health and wellbeing packages to our employees but we would not offer widespread genetic screening unless we knew there was a real health benefit.  In another survey for the Astellas Innovation Debate, we found that half the population would consider a genetic test to discover whether they were at higher risk of developing a serious illness such as cancer, but 40% would not undergo testing for fear the results would leave them feeling depressed and anxious.2  As a progressive company we look forward to a future where we can develop personalised treatments fine-tuned to an individual’s genetic make-up.  But, as an organisation that places a primary emphasis on ethics, we know that these innovations can only achieve their full potential if their wider implications are taken into careful consideration.”

Other key findings:

Just 4% of business leaders support genetic screening of CEO’s and top management to ensure they are fit and healthy enough to do their job.1

Businesses want to screen their employees for: Cancers and heart disease (38%) eye disease & blindness (27%) Alzheimer’s Disease (26%) kidney, liver and pancreas disease (25%) Parkinson’s Disease (24%) and mental illness (21%).1

Only 16% of workers said they would be motivated to have genetic testing if it were offered by their employer.2

26% of workers would refuse a genetic test for fear of discrimination in the workplace2

Just 6% would be happy for their employer to have access to their health data.2 

The Astellas Innovation Debate: i-Genes – What the DNA and Data Revolutions mean for our Health, will take place on Thursday 29th January 2015 at the Royal Institution of Great Britain.

George Freeman, MP, the Minister for Life Sciences, will give the keynote speech, outlining the Government’s aim to develop, assess and adopt new drugs, devices and diagnostics as we move towards 21st century of personalised healthcare.

This year’s Debate will be chaired by Jonathan Dimbleby. The panel of world-leading experts will include: American biologist Dr Leroy Hood, whose leadership led to automated DNA sequencing human rights activist Baroness Helena Kennedy, QC Professor Lionel Tarassenko, CBE, Head of Engineering, University of Oxford, and Professor Rolf A. Stahel, President of the European Society for Medical Oncology. They will discuss:

The possibilities these new genetic insights offer for our health

Whether we can afford the full range of medicines personalised healthcare would demand

The implications for health professionals – will a mass of data from new technologies create a new army of the worried well and swamp doctors?

With more of our health data digitised, how long before it falls into the wrong hands?

At what point does smart care become intrusive surveillance?    

Whether the effort put into these frontiers of medicine diverts resources from the real crises of modern healthcare – such as obesity, antibiotic resistance and neurodegenerative disease?

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