By Fuji Nagami, Professor of Tohoku Medical Megabank Organization, Tohoku University (Japan), Misaki Arakawa, Researcher
Have you ever wondered about the following things when writing a press release? ― “The researchers of this study asked me to support their conclusions, but isn’t it too much of a leap based on the results?”, “If I write a story in relation to the disease, it will generate interest among readers and go viral on the Internet. But is that the right thing to do?” These worries are commonly seen in genomic research and medicine. To help press officers address these challenges, we developed a press release guide as part of a research project at the Tohoku Medical Megabank Organization, Tohoku University, in Japan.
Developing the press release guide
First and foremost, genomic research findings are difficult to understand. The terminology and concepts are quite confusing, and people view the genome as a decisive factor in determining a person’s life. Our previous study revealed that about 77% of Japanese newspaper articles on genomic research and medicine issued from 2021 to 2022 were sourced from press releases. This means inaccurate reporting in press releases will reach readers directly, and it may lead them in the wrong direction. Aiming to improve the quality of press releases and news coverage of genomic research, we developed the “Press Release Guide for Genomic Research and Medicine” and released it in February 2025. (English version is available at: https://genomeppi.jp/topics/pdf/press_release_guide_web_en.pdf )
This guide comprises 12 items: seven that apply to all scientific research press releases, and five that are specific to genomic research press releases. The five genomic research-specific items are:
- Ensure that the information does not lead to the identification of a patient or study participant
- Ensure that the information does not prompt readers* to change their behavior in ways that are detrimental to their health (*readers include patients, study participants, family members, and medical professionals)
- Ensure that the information does not evoke sorrow among readers for their relatives or closely related individuals
- Ensure that the information does not lead to prejudice or discrimination against specific populations
- Ensure that the information regarding genome or gene-disease associations is not reported in a manner that promotes “genetic determinism.”
One key feature of these five items is that they were made through a “patient and public involvement (PPI)” approach. Draft items were made first based on literature review, and they were refined according to the feedback gained from two types of discussions. One of them included a diverse group of people including researchers, medical professionals, certified genetic counselors, members of the public, and journalists. The PPI approach was a great help to enhance the guide’s quality with a range of viewpoints. The other seven items for scientific research press releases were made based on the analysis of some existing press release guides, issued by academic medical societies and organizations. One of them, the Stempra Guide for being a Media Officer [3rd edition], served as a good model for us when making our guide. Notably, Shane Canning, Co-Chair of Stempra, kindly participated in an interview and had insightful discussions with us.
Reception and future direction
We introduced the 1st edition of our guide in the 69th Annual Meeting of the Japan Society of Human Genetics in October 2024 and received mostly favourable feedback from the participants. We learned that this guide would help establish a foundation for fostering communication among stakeholders with different roles and expectations. To promote its effective use, we are planning various initiatives, including collaborative approaches with communities both in Japan and in other countries. From this viewpoint, we greatly appreciate Shane’s offer to participate in a Stempra online event in June 2025.
Difference between Japan and the UK
Most readers of this blog are probably English speakers living in the United Kingdom. There is a major difference in the role of press releases between the U.K. and Japan, which stems from the language used in academic papers. In science and medicine, academic papers are written in English. Even with the use of machine translation like DeepL, many Japanese people find it difficult to understand the research findings written in English. This means that press releases written in Japanese are often the closest source of research results for the Japanese.
Does the intrinsic difference in press releases of both countries affect readers’ behavior? How do they confirm the accuracy of the information? Do they change their behavior after reading press releases? The comparison between the U.K. and Japan will bring us new insights for press releases and subsequent news coverage. We hope that the release of our guide will provide good opportunities to promote communication among all people involved in genomic research and public communication.