Picking Terms with Precision

The completion of the Human Genome Project in 2001 laid the groundwork for a tailored approach to medicine—one where patients are diagnosed and treated based on genetic, biological, environmental and lifestyle factors. Now a burgeoning field, this paradigm is often known by two names: precision medicine and personalised medicine.

While the terms precision and personalised medicine overlap, they have subtle but important differences that may signal the goals and values of policy makers. Initially adopted by the Human Genome Project and still used by the European Union today, ‘personalised medicine’ implies individualised care and treatment unique to each patient. ‘Precision medicine,’ on the other hand, is used by other official bodies like Singapore’s Ministry of Health (MOH) to emphasise that the initiative is based on subcategories of patients grouped by risk of disease or response to interventions.

However, members of the public may interpret the two terms differently than intended based on their cultural background and upbringing. This is significant because how people perceive these terms can affect their acceptance and willingness to contribute their data, which in turn can determine the success of ventures like Singapore’s National Precision Medicine (NPM) Programme.

On the larger scale, increasing participation is crucial to address the underrepresentation of Asian populations in genomic studies and precision medicine initiatives: although Asian populations make up roughly 60 percent of the world population, just 14 percent of 2,511 genome-wide studies were performed on those with Asian ancestry as of 2016.

Finding a Way with Words

Home to three of the main ethnic groups in Asia—Chinese, Malay and Indian—Singapore is ideal for exploring possible connotations of the terms ‘personalised medicine’ and ‘precision medicine’ in different ethnic groups. That about 73 percent of Singaporeans are bilingual also gives researchers like Serene Ong, a PhD candidate at the National University of Singapore’s Centre for Biomedical Ethics, the chance to explore how the terms translate in other languages. Ong is part of a large team funded by a Social Science Research Thematic Grant and MOH examining trustworthy governance for sharing health-related data through a series of linked projects.

To learn the nuances of the two terms in different languages and the perspectives of minority groups who primarily speak languages other than English, the team recruited 24 ordinary Singaporeans to participate in focus groups conducted in three of the country’s major spoken languages—English, Mandarin and Malay.

A short initial discussion revealed that most of the participants were not familiar with the term ‘precision medicine’. For instance, participants in the Malay-speaking group had not heard of the term because the Malay word for ‘precision’ (‘kepersisan’) used in the study is uncommon in itself. Likewise, few participants in the English- and Mandarin-speaking group recognised the term and were more familiar with ‘personalised medicine’ instead.

“While the term ‘precision medicine’ more accurately conveys the vision of the NPM, there were some initial preferences for the term ‘personalised medicine’ because it sounded more familiar,” Ong said. In contrast, the participants felt that ‘precision medicine’ was more abstract and technical.

The researchers also noted that educational background could inform a person’s field of expertise, which in turn influences how they perceive certain terms. For example, participants with engineering and chemistry backgrounds would likely associate the term ‘precision’ with how well two or more measurements agree with each other — a clear difference from the definition of ‘precision medicine.’

According to Ong, the ambiguity surrounding the term ‘precision’ highlights the need to use clear and comprehensible communications when implementing the NPM. “It is important that public communications are reliable, relatable and digestible, and where possible, create dialogue with community rather than a unilateral flow of information from the experts to the public,” she said.

Learn by Watching

In today’s technology-driven society, it is not uncommon for novices to learn new concepts and skills through informational videos, typically found online. Even short videos can be effective in introducing seemingly complex topics to an audience encountering the subject for the first time.

The team found this to be the case in their study. After sharing their initial thoughts, the participants were shown a five-minute video to introduce them to the concept of precision medicine and programmes like the NPM. Without using either of the terms ‘personalised medicine’ or ‘precision medicine,’ the video promoted a shift in the preferences of participants in all three groups towards the latter term.

Through the video, participants were able to gain a clearer understanding of the concepts and goals of precision medicine, leading many to acknowledge that the term ‘precision medicine’ more accurately described the approach. While some still personally preferred ‘personalised medicine,’ most participants did not seem to have a strong preference for either term.

Although the researchers did not set out to assess the effectiveness of their video, it proved to be an effective educational intervention. In addition to easing unfamiliarity on precision medicine, the video also prompted discussion about the drawbacks of the underrepresentation of Asian populations in genetics data. Bringing such issues to light will further efforts to diversify genomics research.

“The lack of understanding about technical terms can be overcome with clear and transparent communications that invite diverse communities to engage in dialogue with researchers and policymakers about the ultimate goals and purpose of the NPM, and how it can benefit all Singaporeans now and in the future,” Ong concluded.

This research is supported by the Ministry of Education, Singapore, under its Social Science Research Council Thematic Grant (MOE2017-SSRTG-028), and the Precision Medicine Coordination Office, Ministry of Health, Singapore.

Reference:

Ong, S., Ling, J., Ballantyne, A., Lysaght, T., Xafis, V. Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues. Asian Bioethics Review 13, 179–194 (2021).