4th February 2014
By Anna Middleton
My research is all about the ethical implications of genetics; we need to understand the impact of genetics on people and to use that understanding to steer policy. There’s absolutely no point in implementing genetics in the NHS if people don’t want it, so you have ask a cross section of people how they feel and you have to reach as many people as possible.
Before this research started I had never used any social media; I wasn’t on Facebook, Twitter or LinkedIn and I didn’t have a blog. I was slightly dubious about using these channels to recruit people to complete my survey as I didn’t know how credible they would be for serious research.
In actual fact, what I got was an eclectic mix of people, including health professionals, genomic researchers, young people and the over 65s. All in all, the sample was as high-quality as any other recruitment method and it returned the highest number of respondents – 75 per cent of the participants in this research came through social media channels.
The social media consultant I used recommended that I base the whole campaign around a blog, so we created the Genomethics Blog using WordPress. This was used as a forum to debate the issues and to share news and views from world of genetics. These blog posts were promoted on Facebook, Twitter and LinkedIn and each post linked to the online survey.
I was impressed by the number of academics who had a presence on Twitter and who were using the micro-blogging platform to share their work and conduct debates among other academics and the wider public.
At a recent conference in Boston, I discovered that I could use Twitter to keep up with the sessions I wasn’t in through the Twitter feed, so I was essentially attending two or three at the same time. My husband back in Cambridge also got involved, by following the conference on Twitter and seeing the reaction to my talk as it was happening.
In the coming months, I’m going to be using social media again to disseminate the results and analysis of the research that I’ve conducted. I tweeted about the publication of our first methods paper last week and there were 20 retweets within a few minutes. The feedback is so instant; it’s really satisfying.
In the near future, we are going to see a great deal of social science research conducted in this way and it can only be a positive move. For genomics in particular, it’s incredibly important that the public is informed and engaged as genomic technology, testing and treatment moves from the research lab into the clinic.
Anna Middleton is a social scientist and registered genetic counsellor researching ethics and genomics at the Wellcome Trust Sanger Institute.
- Middleton, A et al. (2013) Online questionnaire development: Using film to engage participants and then gather attitudes towards the sharing of genomic data. Social Science Research. doi: 10.1016/j.ssresearch.2013.12.004.
- Middleton, A et al. (2014) Position statement on opportunistic genomic screening from the Association of Genetic Nurses and Counsellors (UK and Ireland). European Journal of Human Genetics. doi: 10.1038/ejhg.2013.301