New genome-editing technologies, such as CRISPR, allow scientists to make very precise, permanent changes to the DNA of any cell–potentially, this technology could “work around” the gene which makes faulty haemoglobin in sickle cell disease. Editing genetic information can now be done faster, more cheaply and more easily than ever before.

Gene editing technologies have a number of possible applications, and difficult questions are being raised about how, when and if they should be used. It is therefore important that your voices–the voices of patients–are central to the debate.

The Genetic Alliance (of which we’re a member) are undertaking a survey which aims to ensure that technological research and innovation proceeds in a way that is ethical and socially acceptable. We invite you to take part in this survey if you live with sickle cell: your views are important to making sure this technology is used how you think it should be used.

The survey will take about 20 minutes to complete, and your data will be completely confidential. Please click the link below to make your voice heard!

Take the Gene Editing Technologies Survey.