Genomics is becoming an increasingly important aspect of cancer prediction, diagnosis, and treatment…
We think that those most affected by new research techniques should have a say in their regulation and use. As part of a European Commission funded project, we are asking our patient members to share their view on new gene editing technologies, via an online survey.
Last month a researcher at the Crick Institute in London submitted an application to the Human Fertilisation and Embryology Authority to carry out research on human embryos using a new gene editing technology called CRISPR. This technology is used to edit the DNA code in a cell using a ‘cut and paste’ technique. Scientists can search for a particular stretch of DNA code in a cell and cut it out, sometimes replacing it with a different piece of code. This means scientists can ‘delete’ a section of DNA that is causing a problem within the cell, or replace a malfunctioning gene with a working version.
If the request by the Crick Institute’s researcher is permitted, the embryos used will never be allowed to develop beyond a few cells or be implanted into a woman’s womb. The application comes a few months after a research team in Guangzhou, southern China, published a paper detailing the successful use of the CRISPR technique to edit a gene related to the condition β-thalassaemia, also in non-viable embryos. As with any new technology, as it develops, it is important to debate its use with experts, political decision makers, and with the general public to work out the best way to proceed, and to ensure research is conducted responsibly.
As scientists begin to undertake more research using gene editing technologies, we think it is important that patients have a say in how to use and regulate research and its applications. We are part of a project called NERRI (Neuro-Enhancement: Responsible Research and Innovation), which is looking at the views of the general public across Europe on the use and regulation of neuroenhancement technologies. These are technologies, from drugs to computing to gene editing, that seek to enhance human cognitive abilities. Our survey focuses on gene editing technologies particularly. As part of our contribution, we have developed a survey to canvass the views of our members on gene editing applications.
There are some challenging ethical questions still to answer about gene editing techniques, especially when applied to human DNA. There is potential for gene editing technologies to be used in the future to enhance certain characteristics in healthy people, as well as those with life limiting or life shortening conditions, which some people feel is unethical. Others, including some scientists, feel we should not begin editing human DNA in embryos, even when restricted to research, without a thorough knowledge of the potential long term effects gene editing at the embryo stage could have if the embryo were allowed to grow. We want to ask patients for their views on these kinds of difficult questions.
We will be presenting the results of our survey at a meeting of NERRI project contributors in November, and the outcomes of the project as a whole will be shared with those making key decisions about neuroenhancement technology regulation across Europe. We’ll also update our website with the survey results.
You can help us represent the patient voice by completing our survey. It should take around 20 minutes, and includes a short video about gene editing and CRISPR. We want to put forward as detailed and accurate a picture of patient views on gene editing as we can, to have a real impact on European wide decision making about responsible research.
This article was written by our Public Engagement and Projects Officer, Angela Wipperman. If you have any questions or comments about this work please contact Angela.