Patients, families, their carers and the patient groups that support them are stakeholders and advocates for the research and development of innovative solutions and improvements to their lives, health and well-being. For those living with, and at risk of serious conditions, enhancement of their health and well-being is a vital and important goal, whether this is amelioration of symptoms, arresting progression of the disease or a cure. Those directly affected may view and appraise the risks and benefits of an innovative therapy or enhancement differently from other groups and communities in civil society who may have a better level of health and well-being.
Exploring and mapping the motivation and role that these groups play in pursuing the advancement in scientific knowledge and its practical application for neuro-therapies and -enhancement will make a contribution to responsible research and innovation in this area. Identifying the interplay or the tensions between this group and other groups’ views of enhancement and therapeutic goals can help to understand specific problems and issues that will require attention and effort on policy and regulation.
The views of this group are crucial to any societal debate surrounding neuro-enhancement yet gathering or facilitating them can be particularly difficult. Traditional engagement methodologies such as focus groups and face-to-face meetings are often not appropriate for engaging with patients, families and their carers who have additional commitments such as treatment regimes and caring responsibilities, as well as poor or inconsistent health.
At Genetic Alliance UK we recently delivered an engagement project via free online applications that allowed patients to participate from the comfort of their own homes at a time convenient for them. This reduced barriers to participation, allowing patients to effectively share their views on whole genome sequencing – another innovative technology that could have therapeutic implications for patients as well as repercussions for wider society.
Given the success of this project, which incorporated multimedia and interactive elements, Genetic Alliance UK is planning to deliver a mutual learning exercise (MLE) this autumn which will be based upon a similar online format. It will introduce patients and families to the concept of neuro-enhancement as well as exploring the related practical, ethical and societal issues. In addition to having a guided session, we will arrange live online chat for participants to share views with each other, ask questions and hear the opinions of others. Not only will this be a tool to inform and provoke debate surrounding neuro-enhancement but it will allow us to gather the views and opinions of this group, essential for contributing to policy recommendations for responsible research and innovation.
If you’d like to keep up to date with how this MLE progresses or how you can become involved then feel free to sign up to our fortnightly newsletter here or by following us on Twitter @GeneticAll_UK.
Picture credits: Josh Tucker / Genetic Alliance UK