October 2012 Scientists Informed by General Public Regarding Gene and Stem Cell Therapy

Report to be published on 2 November

A cure for osteoarthritis would be a sensation. Many international research teams are working towards this goal, but few, if any, of these groups have asked the ‘target group’ of their research, patients and interested lay people, for their opinion.

Researchers at the Science Foundation Ireland funded Regenerative Medicine Institute (REMEDI) at NUI Galway have led the Irish effort to hear the views of the ordinary patient member of the general public. The speakers of the patient and citizen panels will officially present their report to Marian Harkin, MEP at 5pm this Friday, 2 November in the Orbsen Building at NUI Galway. Members of the general public, political and scientific communities and the media are expected to attend.

The research was run by a project called GAMBA (Gene Activated Matrices for Bone and Cartilage Regeneration in Arthritis), which asked osteoarthritis patients and citizens to participate in an intensive dialogue and to evaluate their EU-funded research. A series of discussion panels took place in Germany, Switzerland and in Galway and surprisingly, the opinions generated by the five panels involved are quite similar, despite different professional and cultural backgrounds.

Involving end users at the early stages of research is a novel and exciting approach which could lead to better understanding and acceptance by the public and also gives valuable insights to the researchers themselves.

Researchers at REMEDI in NUI Galway were joined by 17 patients and 10 interested citizens, aged between 19 and 78. Over the course of four days the volunteers were given comprehensive information. Researchers, journalists, ethicists, surgeons and health professionals from NUI Galway, and elsewhere in Ireland and the UK, joined them to discuss the opportunities, risks and the ethical aspects of adult stem cell and gene therapies and nanomedicine.

The resulting report emphasises the need for more research in osteoarthritis, allied with a responsibility for researchers not to raise false hopes in patients. Panels expressed concerns about the ability of ethics committees to assess complex topics under time pressure with the Irish citizen panel called for a peer review system.

All panel groups were adamant that good communication between research teams and between researchers and the public was of utmost importance and stressed that successes and failures in research needed to be published. All panels also thought it was important not to neglect research into the causes of osteoarthritis and to also explore alternative and complementary medicine. Overall, the Irish participants were the most positive in the evaluation of the process with the final outcome a tentative endorsement of the GAMBA approach.

“Our experience with the Galway panels was very positive and rewarding.  The dialogue challenged us as researchers to be more thoughtful about research questions and ethical standards, to place the patients centre stage and engage with the public in general as we develop novel therapies for the medicines of the future,” says Dr Mary Murphy, the GAMBA leader at REMEDI. 

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