Developing a Press Release Guide for Ethical, Legal, and Social Issues of Genomic Research
Ethical Legal Social Issues (ELSI) Public Health and Policy
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Introduction:
News coverage of genomic medicine and research has increased, with a significant percentage sourced from press releases by research institutes. Given that news about genomic research can influence readers’ behavior and that press releases are now publicly accessible online, it is essential for press releases to address the ethical implications of genomic information. We previously developed a draft press release guide for genomic research encompassing 5 themes (identification of an individual, readers’ unnecessary behavior, feelings of guilt, stigma against certain populations, and genetic determinism), which we refined based on an analysis of perspectives from diverse fields. Here, we present the first version of the press release guide, highlighting new insights into ethical considerations shared by Japan and other countries.
Methods:
To gather feedback on the draft press release guide, we employed two approaches: focus group interviews (FGI) with people involved in press releases (i.e., press officers, researchers, and journalists, n=6) and group discussions (GD) with our research team, including patients and members of the public (n=28). The FGI/GD data were analyzed using thematic framework analysis based on the method by J. Ritchie and L. Spencer (2003). One researcher independently reviewed the transcript and coded it, after which the second researcher reviewed the coding in detail, discussing necessary changes.
Results:
Some terms in the draft, such as “unnecessary behavior,” “feelings of guilt,” and “stigma,” were suggested for revision. The ambiguity of the 5 items’ targets and the insufficiency of supplementary information were also noted. Some participants expressed concerns regarding potential distortion of scientific facts due to excessive considerations. Based on the analysis, we revised the draft by refining terminology and expressions, clarifying each item’s targets, and adding supplementary information for researchers and the media. The revised 5 items, along with supplementary information, are as follows: 1) Ensure that the information does not lead to the identification of a patient or study participant. [Supplementary] Do not avoid publicizing study results due to concerns about identifying an individual; instead, carefully weigh the risks and benefits of reporting and highlight significant results that may be overlooked. 2) Ensure that the information does not prompt readers to change their behavior in ways that are detrimental to their health. [Supplementary] “Detrimental behavior change” includes both excessive medical testing due to anxiety and reluctance to consult a physician. 3) Ensure that the information does not evoke sorrow among readers for their relatives or closely related individuals. [Supplementary] Clearly state the study’s caveats and limitations. Be mindful that certain technical terms may have a strong impact on readers (e.g., founder effect). 4) Ensure that the information does not lead to prejudice or discrimination against specific populations. [Supplementary] The use of population descriptors in genomic research is a highly sensitive issue. For further details, please refer to the report by the National Academies of Sciences, Engineering, and Medicine. 5) Ensure that the information regarding genome-gene disease associations is not reported in a manner that promotes “genetic determinism.” [Supplementary] Note that not all genetic diseases are transmitted down the family line (e.g., the difference between somatic and germline variants).
Conclusion:
We developed the press release guide (1st version) for genomic research and disseminated it in Japan in October 2024. Feedback received includes one journalist’s observation that the guide is a useful resource for news coverage, particularly for journalists not specializing in the genomic field. Further work is required to evaluate its impact and enhance it based on user feedback. We believe that this guide, along with the insights from this study, will help establish a foundation for fostering communication among stakeholders in genomic research.
News coverage of genomic medicine and research has increased, with a significant percentage sourced from press releases by research institutes. Given that news about genomic research can influence readers’ behavior and that press releases are now publicly accessible online, it is essential for press releases to address the ethical implications of genomic information. We previously developed a draft press release guide for genomic research encompassing 5 themes (identification of an individual, readers’ unnecessary behavior, feelings of guilt, stigma against certain populations, and genetic determinism), which we refined based on an analysis of perspectives from diverse fields. Here, we present the first version of the press release guide, highlighting new insights into ethical considerations shared by Japan and other countries.
Methods:
To gather feedback on the draft press release guide, we employed two approaches: focus group interviews (FGI) with people involved in press releases (i.e., press officers, researchers, and journalists, n=6) and group discussions (GD) with our research team, including patients and members of the public (n=28). The FGI/GD data were analyzed using thematic framework analysis based on the method by J. Ritchie and L. Spencer (2003). One researcher independently reviewed the transcript and coded it, after which the second researcher reviewed the coding in detail, discussing necessary changes.
Results:
Some terms in the draft, such as “unnecessary behavior,” “feelings of guilt,” and “stigma,” were suggested for revision. The ambiguity of the 5 items’ targets and the insufficiency of supplementary information were also noted. Some participants expressed concerns regarding potential distortion of scientific facts due to excessive considerations. Based on the analysis, we revised the draft by refining terminology and expressions, clarifying each item’s targets, and adding supplementary information for researchers and the media. The revised 5 items, along with supplementary information, are as follows: 1) Ensure that the information does not lead to the identification of a patient or study participant. [Supplementary] Do not avoid publicizing study results due to concerns about identifying an individual; instead, carefully weigh the risks and benefits of reporting and highlight significant results that may be overlooked. 2) Ensure that the information does not prompt readers to change their behavior in ways that are detrimental to their health. [Supplementary] “Detrimental behavior change” includes both excessive medical testing due to anxiety and reluctance to consult a physician. 3) Ensure that the information does not evoke sorrow among readers for their relatives or closely related individuals. [Supplementary] Clearly state the study’s caveats and limitations. Be mindful that certain technical terms may have a strong impact on readers (e.g., founder effect). 4) Ensure that the information does not lead to prejudice or discrimination against specific populations. [Supplementary] The use of population descriptors in genomic research is a highly sensitive issue. For further details, please refer to the report by the National Academies of Sciences, Engineering, and Medicine. 5) Ensure that the information regarding genome-gene disease associations is not reported in a manner that promotes “genetic determinism.” [Supplementary] Note that not all genetic diseases are transmitted down the family line (e.g., the difference between somatic and germline variants).
Conclusion:
We developed the press release guide (1st version) for genomic research and disseminated it in Japan in October 2024. Feedback received includes one journalist’s observation that the guide is a useful resource for news coverage, particularly for journalists not specializing in the genomic field. Further work is required to evaluate its impact and enhance it based on user feedback. We believe that this guide, along with the insights from this study, will help establish a foundation for fostering communication among stakeholders in genomic research.
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