What is a biobank?
A biobank is a large and organised collection of biological materials that can b…
NERRI - Neuro-Enhancement: Responsible Research and Innovation was a three-year project supported by the European Commission, under the 7th Framework Programme. The project aimed to contribute to the introduction of responsible research and innovation in neuro-enhancement in the European area and to inform policy makers on public views around neuro-enhancement technologies.
The project involved different stakeholders, from research centres and universities to patient support groups, and promoted a broad discussion about neuro-enhancement. This was achieved through mobilisation and mutual learning (MML) activities such as interviews and workshops engaging scientists, policy-makers, industry, civil society groups, patients and the wider public.
The project involved 18 partners from 11 different countries and Genetic Alliance UK is one of these partners.
Neuro-enhancement refers to the use of drugs and medical devices to enhance certain brain processes in healthy persons who do not have any mental illness. For example, evidence suggests that students are taking neuro-enhancing drugs to aid their concentration during exam periods and the military have long been known to use such drugs during fatigue-inducing missions.
We live in a society where individuals without health concerns are encouraged to act continuously to promote their well-being in the absence of any symptoms. It is becoming increasingly difficult to distinguish treatments from enhancement: the use of neuro-enhancement technologies is a controversial topic raising fundamental ethical, legal, social and economic issues.
Genetic Alliance UK worked with our member organisations to convene a discussion that seeks to find out the hopes, fears and expectations of patients with regards to neuro-enhancement, with a particular focus on enhancement via genome editing.
In September 2014, we organised a Science Café – a discussion between researchers and the general public – in London that asked whether we should be using neuro-enhancing techniques to benefit public health. At the beginning of November 2014 we hosted another discussion session in Bristol, which involved 50 members of the public exploring and discussing their views on the issue, using a series of scenario cards. These events, along with hundreds of similar activities being held across Europe by different groups, have generated discussion that will inform Europe-wide decisions about the use and regulation of neuro-enhancement technologies.
We met with the project consortium in November 2015 to report on our work and discuss latest findings. At this meeting, we shared news of our latest activity, a survey gathering patient views on genome editing technologies. With the help of many of our members, and the patients they represent, we were able to build a picture of how those affected by genetic conditions might like to see genome editing technologies used.
In developing this survey we wanted to find out what people affected by genetic conditions think of genome editing technologies like CRISPR, and how they think these technologies should be used and applied. You can watch our short video on genome editing and CRISPR. You can download a transcript with useful links and a genome editing and CRISPR factsheet.
For more information about NERRI please visit the NERRI website or contact Mariana Campos, our Public Engagement Manager.