Spring School 2019

109 days

10 hours

38 mins

Public engagement with gene and cell therapy


What is public engagement and why is it important?

Public engagement is the active involvement of the public in scientific research. The aim of public engagement is to be a two-way process that benefits both parties. In medical fields, there is special attention for patients and their families and carers (public and patient engagement, or PPE).

PPE can take many forms such as

  • Informing and inspiring: disseminating information through talks and presentations, social media, science festivals etc.
  • Consulting: inviting views and concerns as well as fresh perspectives through public debates, focus groups, social media etc.
  • Collaborating: working together on projects, such as citizen science, patient panels, participating in research studies


Gene and cell therapies are currently moving into the clinic, with several treatments already licensed for use and many more in the pipeline. Now, more than ever, there is a need to establish a dialogue between researchers, patients, the public, media and policy makers. By working together, we can ensure that research priorities are aligned with patient needs, policies keep patients safe while enabling scientists to conduct research effectively and that a wide range of voices are heard in the debate about the ethics of these new therapies. As Europe's leading society in this cutting edge field of science, ESGCT recognises its responsibility to ensure that information about gene and cell therapy is authoritative and to welcome dialogue on the social, ethical and practical implications of this field.



 

What does ESGCT do to support public engagement?

ESGCT is committed to public and patient engagement with gene and cell therapy. A 2018 survey about public engagement among ESGCT members showed that 83% of respondants are involved in PPE in some way. ESGCT has been running public engagement workshops for early career researchers at our annual Spring School since the first Spring School in Hannover. We also have an award in place for public engagement and science communication. Please consider applying for this if you are involved in PPE with gene and cell therapy! On our forum, you can ask for advice about public engagement and below you can find some useful information to get started on your PPE journey.


Patient organisations

Patient organisations are often very valuable to patients. They may be involved in raising awareness about a disease, patient advocacy (ensuring patients' voices get heard), distributing information about care and research to patients, fundraising for research, and peer support for patients, families and carers. Many different patient organisations exist throughout Europe. Have a look at our Gene and Cell Therapy Community Heatmap to find patient organisations or to put your own patient organisation on the map.


Public engagement resources

We have gathered some resources for public and patient engagement here. They include guidelines on effective engagement as well as information aimed at non-specialists in the form of text, animations and video. There are resources in different European languages. Please email other resources you know of to us.


Public attitudes to gene and cell therapy

According to the 2010 Eurobarometer Special Report 341 “Biotechnology”, 63% of European citizens  approve of human gene therapy research, with the vast majority only approving of this research if it is regulated by strict laws. A further 18% disapprove, unless under very special circumstances. The numbers for both adult (12% approves, 51% approves with strict laws and 17% disapproves unless under very special circumstances) and embryonic stem cells (15% approves, 54% approves with strict laws and 15% disapproves unless under very special circumstances). These numbers highlight the need for a dialogue in order to establish laws that are acceptable and workable for public, patients and researchers.

The Eurobarometer Qualitative Study “Patient Involvement”, also conducted in 2010, showed that there is substantial variation in how much patients want to be involved in their healthcare. Patients with higher level of education, patients with chronic conditions, and younger or middle-aged patients wanted (and often expected) more involvement than other groups. This suggests that patients in the gene and cell therapy field are likely to expect relatively high levels of engagement. As the proportion of patients who are comfortable with online information grows, it seems likely that more patients will expect to be involved in their treatment.

Academics, scientists and researchers are rated by 49% of the general population rated as the most likely to provide trustworthy information (Potential uses for genetic technologies: dialogue and engagement research  conducted on behalf of the Royal Society, 2018). Drawing on specialist knowledge, being dedicated to science rather than profit, working for the global good in the context of real world challenges and independence were all important factors in trust in researchers when it comes to genome editing.