The perception of science and its potential benefits for medical progress varies greatly within society, and depends on someone's ethnic or cultural background, as well as their level of scientific knowledge and understanding. This is the message of the third episode in the Guardian's The Gene Gap Common Threads series, called 'Can we trust science to police itself?'.
In the podcast, Steve Scott, a science communicator at the Guardian, discusses scientific progress in genome editing with members of a Birmingham community with African and Caribbean ancestry who have been affected by, or have had direct experience with, sickle cell anaemia as well as with science students of European origin who participated in a synthetic biology competition, organised by the International Genetically Engineered Machine (iGEM) Foundation.
Scott opens the podcast by introducing CRISPR, which has recently been used in humans for the first time to attempt to treat an inherited form of blindness and which has the potential to treat sickle cell anaemia, among other inherited conditions (see BioNews 1038).
Dr Helen O'Neill from University College London, describes CRISPR to the Birmingham community and explains that the technology relies on short guide RNA sequences, which 'like pieces of Velcro', bind to the intended location on the DNA for editing, and thus direct the CRISPR machinery to the right location.
The therapeutic potential of CRISPR is substantial. As Scott comments, CRISPR could not only be used to treat, but maybe even eradicate diseases such as sickle cell anaemia that have a genetic foundation. Yet in their conversations, many of the participants remained unconvinced and sceptical, despite Dr O'Neill's reassurances.
Some of the individuals affected by sickle cell anaemia felt they have no power to influence, or even question, scientific and medical decisions due to their own lack of knowledge. Others were concerned about how genome editing could lead to racist and unethical experimentation, referring to the 1932 Tuskegee Study. Yet others emphasised that access to such treatments, just as in the case of IVF, would only benefit affluent parts of the world, while in the poorest people would continue to struggle with the basics, such as access to clean water.
On the other hand, some members of the Birmingham community with a more optimistic outlook stressed the difference between editing somatic cells, where the change would affect only the treated individual, and germline cells, in which case the genetic change would be inherited by future generations.
To contrast these trust concerns related to accessing new biomedical technologies by less affluent communities, or patient groups affected by rare conditions, with issues most concerning to young scientists, Scott reminded listeners of the former Dr He Jiankui, who edited the genome of twin girls in 2018 (see BioNews 977).
This was the opener for a discussion among the science students in London, where the range of views presented reflected the ever-present tension between the need for scientific progress and regulation. One of the students, Eloise, who agreed with Dr He's bold project, compared his work to Edward Jenner's experiments in 1796, which would have been considered unethical in the present day, but which led to the development of the first ever vaccine against smallpox.
Another student, Victoria, who disagreed with Dr He's work, countered this by emphasising that the circumstances in the 18th century are not comparable to our modern global world, where communication technologies facilitate an easy and quick flow of information, and thus enable not only scientists, but also the general public, to exchange their views on scientific advances and medical regulations, something which the speaker contended should be encouraged.
Overall, this podcast provided a great platform for the potential beneficiaries of CRISPR-based treatments to voice their views, opinions and concerns about how genome editing would be used, what diseases would be prioritised, or how accessible the potential treatments would be, also in light of historical and socioeconomic context.
Additionally, the listeners had a chance to hear from the next generation of scientists. They gave a wide range of views on how they see scientific progress in genome editing, what degree of regulation they feel is appropriate to facilitate scientific progress while maintaining ethical standards, and how they value science communication and public input on science policy decisions.