Cancer researchers issue warning over data protection plans

Cancer research could become impossible in Europe if a proposed data protection regulation is adopted, according to a medical research body.

July 25, 2014

The European Society for Medical Oncology said that the proposed changes – being considered by the European Union – would put a “halt” to many public health research efforts.

The changes, designed to address data privacy concerns in the digital age, would add a “nearly impossible administrative burden” to cancer research, which could “irreversibly slow down” the pace of cancer research, it added.

The ESMO is the latest body to raise concerns over the potential effects of the proposed data protection regulation on medical research. So far this year the Wellcome Trust, the Medical Research Council and the European University Association have publicly spelled out the problems the changes would cause for science.

The ESMO has suggested that the wording of the regulation be amended to include a “one-time consent” for personal information used in research, instead of the “explicit and specific” consent listed in the proposal.

This would save scientists from having to contact each patient every time they wanted to use their data for research. It would also give them access to data and stored research samples after patients have died, which would be impossible under the proposed system.

The ESMO’s suggested changes would ensure that patients knew what they were consenting to and adds safeguards so that they could withdraw their consent at any time. A similar “one-time consent” is included in the EU’s new clinical trials regulations adopted earlier this year, where it allows researchers to use data for further projects after a trial is over, the ESMO explained.

The president of the ESMO, Rolf Stahel, said: “Our proposal achieves the correct balance between the right to privacy and the right to health. It actually ‘empowers’ patients, allowing them to choose whether to donate their data and tissue for public health research, whose ultimate goal is to find cures.”

Paolo Casali, ESMO public policy committee chair and author of an ESMO position paper on the matter, said: “We are calling upon the European Union to assure that all forms of public health research will survive and be able to function within the safeguards that are in place, without adding the nearly impossible administrative burden of re-consenting each patient, every time, for every single project, which could irreversibly slow down the accelerated pace that cancer research has gained over the past decades.”

holly.else@tsleducation.com

You've reached your article limit

Register to continue

Registration is free and only takes a moment. Once registered you can read a total of 6 articles each month, plus:

  • Sign up for the editor's highlights
  • Receive World University Rankings news first
  • Get job alerts, shortlist jobs and save job searches
  • Participate in reader discussions and post comments
Register

Have your say

Log in or register to post comments

Featured Jobs

Analyst

Greenwich School Of Management Ltd

PhD Research Fellow in Medical Physics

Norwegian University Of Science & Technology -ntnu

Senior Knowledge Officer

European Association For International Education

Postdoctoral position in Atmospheric and Space Physics

Norwegian University Of Science & Technology -ntnu
See all jobs

Most Commented

Doctoral study can seem like a 24-7 endeavour, but don't ignore these other opportunities, advise Robert MacIntosh and Kevin O'Gorman

Matthew Brazier illustration (9 February 2017)

How do you defeat Nazis and liars? Focus on the people in earshot, says eminent Holocaust scholar Deborah Lipstadt

Improvement, performance, rankings, success

Phil Baty sets out why the World University Rankings are here to stay – and why that's a good thing

Warwick vice-chancellor Stuart Croft on why his university reluctantly joined the ‘flawed’ teaching excellence framework

people dressed in game of thrones costume

Old Germanic languages are back in vogue, but what value are they to a modern-day graduate? Alice Durrans writes