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. 2022 Sep 2;14(1):110.
doi: 10.1186/s13148-022-01322-7.

Researcher perspectives on ethics considerations in epigenetics: an international survey

Charles Dupras  1   2 , Terese Knoppers  3 , Nicole Palmour  3 , Elisabeth Beauchamp  3 , Stamatina Liosi  4 , Reiner Siebert  5 , Alison May Berner  6 , Stephan Beck  7 , Ian Charest  8 , Yann Joly  3
Affiliations

Researcher perspectives on ethics considerations in epigenetics: an international survey

Charles Dupras et al. Clin Epigenetics. .

Abstract

Over the past decade, bioethicists, legal scholars and social scientists have started to investigate the potential implications of epigenetic research and technologies on medicine and society. There is growing literature discussing the most promising opportunities, as well as arising ethical, legal and social issues (ELSI). This paper explores the views of epigenetic researchers about some of these discussions. From January to March 2020, we conducted an online survey of 189 epigenetic researchers working in 31 countries. We questioned them about the scope of their field, opportunities in different areas of specialization, and ELSI in the conduct of research and knowledge translation. We also assessed their level of concern regarding four emerging non-medical applications of epigenetic testing-i.e., in life insurance, forensics, immigration and direct-to-consumer testing. Although there was strong agreement on DNA methylation, histone modifications, 3D structure of chromatin and nucleosomes being integral elements of the field, there was considerable disagreement on transcription factors, RNA interference, RNA splicing and prions. The most prevalent ELSI experienced or witnessed by respondents were in obtaining timely access to epigenetic data in existing databases, and in the communication of epigenetic findings by the media. They expressed high levels of concern regarding non-medical applications of epigenetics, echoing cautionary appraisals in the social sciences and humanities literature.

Keywords: Conduct of research; Direct-to-consumer testing; ELSI; Epigenetics; Ethics; Forensics; Immigration; Knowledge translation; Life insurance.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Epigenetic researchers’ perceptions of the scope of their field
Fig. 2
Fig. 2
Influence of respondent characteristics on responses to research questions. A Proportion (%) of respondents in response group 1 (positive) for each group of respondents (see Additional file 1). B Difference between proportions in (A) (gray boxes not statistically significant)
Fig. 3
Fig. 3
Epigenetic researchers' perceptions of the most promising areas in their field (Question: According to you, the most promising opportunities epigenetics hold are for…)
Fig. 4
Fig. 4
Epigenetic researchers' experiences of ethical challenges and dilemmas (faced or witnessed) in the conduct of research and knowledge translation
Fig. 5
Fig. 5
Epigenetic researchers’ level of concern regarding non-medical applications of findings in their field
See this image and copyright information in PMC

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