Personalised medicine is a topic that pops up frequently in the news and has been for what feels like a long time. Considering that most people still haven't experienced it, many might wonder what it actually means in practice and whether they can expect it at their GP surgery any time soon.
Retro Report, a website that subscribes itself to enlightening the public with regard to important news issues, attempts to explain the current state of genetic technology in its three-part mini-series with STAT, called 'The Code'. The three videos cover the past, present and future of genetic technology, including gene therapy and genome editing, which have featured heavily in the news in recent years. The videos are an excellent mix of experts explaining their research in simple terms and relatable stories from patients, who describe their own experiences with genetic technology.
The first video 'Finding the code' focuses on the Human Genome Project, a huge undertaking started in 1990 with the goal of decoding the human genome for the first time. The hopes of scientists and patients alike was that knowing which gene caused a disease would equal a cure. This frontier spirit was demonstrated remarkably well in the video by scientists who worked on the project and shared their expectations and hopes, as well as by patients like Alex, who has a rare mutation resulting in kidney cancer.
Critics of the unhinged optimism displayed by some of their colleagues argue that cracking the genetic code does not equal a cure as the human body is more complicated than that. The makers of this video found a great balance between the hopeful beginnings of the Human Genome Project and the complicated truth of the matter, without dismissing the use or importance of this amazing scientific achievement.
The second video 'Fixing the Code' looks at the advances in treatment that have been made since the introduction of gene therapy about 30 years ago. Both gene therapy and genome editing - including the relatively novel CRISPR approach - are illustrated by experts and patients and are easily understandable for a layperson. One of the experts interviewed is Dr James Wilson at University of Pennsylvania, who was involved in a gene therapy trial that tragically resulted in the death of one young man (see BioNews 028). The issue is addressed in a thought-provoking manner and embedded into the storyline as a cautionary tale.
While one patient in the video experienced a temporary improvement of symptoms, the evidence in favour of gene therapy presented struggles to convince as no gene therapy has actually cured any of the patients who feature. One, therefore, might be left with a slightly hesitant attitude towards gene therapy. This is slightly unfortunate as recent developments have led to the use of safer delivery methods for gene therapy and have shown promising results in eg in cancer treatment.
In the last video 'Selling the Code' genetic home testing kits are in the spotlight and with them all problems and limitations that come with them. This video is more heavily patient-, or customer-focused and leaves the viewer with a well-balanced impression of the issue. While those kits surely can be helpful if a patient should have a straightforward mutation that will definitely lead to eg cancer, it also has the power to create anxiety and doubt, as genetics are often not as simple as having the gene or not.
This is an important point to make, as most genes have hundreds of variants and science isn't able to attach a meaning to each of these differences yet. This is why the programme goes on to explain that now that we have decoded one genome, the next herculean task is to decode as many human genomes as is needed to gain a better understanding of all the little differences between us, and which of those are actually important. Or we might just be accumulating more and more data to find more and more little pieces of the puzzle, none of which is particularly important by itself.
Retro Report provides an easy-to-understand and emotional, but equally scientifically valid and thought-provoking approach to explaining genetic technology in 'The Code', which unfortunately cannot be found often enough in the mainstream media. Taken together the videos send a clear message that is important to understand for people in the past, present and future: it is simply not that simple.