Socialising the genome: building a bridge between the public and the science
Anna Dickinson, Policy Analyst at Public Policy Projects, asks genomics experts Professor Anna Middleton and Vivienne Parry what can be done to encourage people to share their data to support valuable research, identification of those at risk of certain conditions and the development of treatments.
Emerging and developing fields of medicine, such as genomics, data science and artificial intelligence (AI), have the potential to transform how healthcare is delivered around the world. The ongoing Covid-19 pandemic has showcased this through the development of the vaccines and sequencing of pathogens to identify new variants. Nevertheless, as has been shown by high levels of vaccine hesitancy globally, many of the people these treatments are designed to help do not trust such advances.
Within the four walls of clinical and research settings, the advancements in healthcare offered by genomics are championed. However, the individuals who see such positives are mostly already active participants in the field, whether as practitioner, patient, or researcher. Outside this environment, people often are not exposed to genomics, and without an increase in engagement, the associated benefits will go unknown to the general public.
The question is how to engage the public with genomics. If even the word genomics has the power to confuse the average person, the science behind it might appear impenetrable. Following the expression coined by Professor Anna Middleton, Head of Society and Ethics Research at Wellcome Conneting Science, and Vivienne Parry, Head of Engagement at Genomics England, the idea of “socialising the genome” has become imperative.
“Genomics” is a common buzzword that many are comfortable with in clinical, research and academic settings. However, efforts being made to engage the public are few and far between. Although the 100,000 Genomes Project introduced in 2012 began establishing a strong precedent by creating a “participant panel”, this fails to appropriately engage the wider public who have very limited knowledge of genomics.
The intrinsic limitation that lies at the core of engaging the wider public with the work of genomics is that many feel alienated from, or do not understand, the fundamentals of this particular branch of science and medecine. But why should they? To generate public engagement in genomics, the derived benefits must be rendered easily accessible. This approach was showcased by the Your DNA, Your Say project, which gathered and assessed global public attitudes towards genomics and genomic data sharing, engaging 37,000 people from 22 countries and conducted in 16 languages. The message is clear; we need to build a bridge between the public and the science.
Professor Anna Middleton explains: “Research tells us that public audiences across the world are very unfamiliar and mistrusting of genomic data sharing and do not appreciate the benefits genomics can offer society. Without broad public support and awareness, there is a real risk of confusion leading to public backlash. We need to bring public audiences with us if genomic technology is to become a routine part of healthcare, and this means communicating in ways that have meaning for them.
Genomics continue to penetrate mainstream clinical practice, and so the need for the layperson to understand both what they are signing up to and where they are sending their genetic data becomes more pressing. This is particularly true in the context of the growing use of at-home tests provided by private companies such as 23andMe. Without first establishing an understanding of the fundamentals, the scope for people to develop a mistrust in how their data is used and why increases.
Progress made on newborn sequencing
As scientific understanding of genomics has risen, the cost of sequencing has dropped, and experts have begun pondering how the benefits of whole genome sequencing (WSG) can be stretched. For example, Genomics England, in partnership with engagement specialists Hopkins Van Mil, commissioned a new national public dialogue focusing on newborn screening, sense checking the public’s response and awareness.
The resulting report, Implications of whole genome sequencing for newborn screening: A public dialogue, highlighted that overall “participants were supportive of the potential use of WGS for newborn screening”. Screening at an early age provides the opportunity to identify individuals who are at a higher risk of particular diseases. Furthermore, where treatments are currently not available, those identified as being “high-risk” could be offered the opportunity to participate in research supporting new therapies and treatments.
This underlines a positive shift in the awareness and opinions of the general public. Nonetheless, more can and should be done. Even though the overarching attitudes reflected in the report were positive, the shared public sentiment was not without its hesitations. Questions were raised surrounding consent, data usage and storage, and the ethical frameworks that will govern the data management.
Why does engagement matter?
Genomics is an ever-growing and continuously developing branch of science and medicine and is advancing at a rapid rate. As developments continue to occur, their impact will reach more and more of the general public, with or without their knowledge. Increased engagement and awareness are therefore essential.
Vivienne Parry makes the point: “There are many aspects of genomics, like pharmacogenomics, that are beginning to reach people who don’t think of themselves as ill. So engagement needs to go beyond patients to include the wider public, especially those who are disengaged. ”
Levels of trust, engagement and, ultimately, participation differ greatly among not only those who are at the heart of healthcare services, such as clinicians and patients, but the wider public. Further examination indicates a high level of disparity between the trust and engagement offered by minority communities. Genomics possess the power to improve and benefit the health of everyone, but cannot do so unless the data used to conduct such necessary research reflects everyone.
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