Researcher perspectives on ethics considerations in epigenetics: an international survey
Researcher perspectives on ethics considerations in epigenetics: an international survey
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.
Conduct of research, Direct-to-consumer testing, ELSI, Epigenetics, Ethics, Forensics, Immigration, Knowledge translation, Life insurance
Dupras, Charles
5cf48f6b-d183-4ac4-83d1-87fa0bf4d7f2
Knoppers, Terese
dc66fdae-913d-40d0-a015-e95c96867179
Palmour, Nicole
1d853fc6-7935-4a0b-bdb5-839bcf7aa12c
Beauchamp, Elisabeth
aacaeafd-ce1f-43dc-bde9-ab06b9a6faee
Liosi, Stamatina
6ccd2496-8559-4619-ad2d-b670a3d14279
Siebert, Reiner
47869d4a-d35d-4638-8744-1adb6e03fadb
Berner, Alison May
5684e499-7790-4fc1-b1f3-2ea5989bc4d7
Beck, Stephan
50f0c07a-19a8-4bca-adbc-af41a3800412
Charest, Ian
f832a138-af6c-4678-9bf2-66cc36c0fc8c
Joly, Yann
00bd8e6a-7b65-432c-b3d7-06c3ed0526aa
2 September 2022
Dupras, Charles
5cf48f6b-d183-4ac4-83d1-87fa0bf4d7f2
Knoppers, Terese
dc66fdae-913d-40d0-a015-e95c96867179
Palmour, Nicole
1d853fc6-7935-4a0b-bdb5-839bcf7aa12c
Beauchamp, Elisabeth
aacaeafd-ce1f-43dc-bde9-ab06b9a6faee
Liosi, Stamatina
6ccd2496-8559-4619-ad2d-b670a3d14279
Siebert, Reiner
47869d4a-d35d-4638-8744-1adb6e03fadb
Berner, Alison May
5684e499-7790-4fc1-b1f3-2ea5989bc4d7
Beck, Stephan
50f0c07a-19a8-4bca-adbc-af41a3800412
Charest, Ian
f832a138-af6c-4678-9bf2-66cc36c0fc8c
Joly, Yann
00bd8e6a-7b65-432c-b3d7-06c3ed0526aa
Dupras, Charles, Knoppers, Terese, Palmour, Nicole, Beauchamp, Elisabeth, Liosi, Stamatina, Siebert, Reiner, Berner, Alison May, Beck, Stephan, Charest, Ian and Joly, Yann
(2022)
Researcher perspectives on ethics considerations in epigenetics: an international survey.
Clinical Epigenetics, 14 (1), [110].
(doi:10.1186/s13148-022-01322-7).
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.
More information
Accepted/In Press date: 29 July 2022
Published date: 2 September 2022
Additional Information:
Funding Information:
The authors would like to thank the Multidimensional Epigenetic Mapping Consortium (EMC) at McGill University for their support and the Canadian Institutes of Health Research (CIHR) for a 3-year fellowship supporting Dr. Dupras’s work. This work was also conducted as part of the Bioethics Working Group of the International Human Epigenome Consortium. We would also like to thank Dr. Guillaume Bourque, Head of the Epigenomics Mapping Center at McGill, for his support for the ethical aspects of epigenetic research and his timely feedback and Dr. Martin Hirst (UBC), Project Leader of the Canadian Epigenetics, Environment and Health Research Consortium (CEEHRC) for his support with the recruitment process.
Funding Information:
The authors would like to thank the Multidimensional Epigenetic Mapping Consortium (EMC) at McGill University for their support and the Canadian Institutes of Health Research (CIHR) for a 3-year fellowship supporting Dr. Dupras’s work. This work was also conducted as part of the Bioethics Working Group of the International Human Epigenome Consortium. We would also like to thank Dr. Guillaume Bourque, Head of the Epigenomics Mapping Center at McGill, for his support for the ethical aspects of epigenetic research and his timely feedback and Dr. Martin Hirst (UBC), Project Leader of the Canadian Epigenetics, Environment and Health Research Consortium (CEEHRC) for his support with the recruitment process.
Funding Information:
This work was supported by the Multidimensional Epigenetic Mapping Consortium (EMC) at McGill University under Grant CEE-151618 and Canadian Institutes of Health Research (CIHR) under Grant MFE-152574.
Publisher Copyright:
© 2022, The Author(s).
Keywords:
Conduct of research, Direct-to-consumer testing, ELSI, Epigenetics, Ethics, Forensics, Immigration, Knowledge translation, Life insurance
Identifiers
Local EPrints ID: 477914
URI: http://eprints.soton.ac.uk/id/eprint/477914
ISSN: 1868-7075
PURE UUID: da9f4956-3afe-41ac-9857-da047618577e
Catalogue record
Date deposited: 16 Jun 2023 16:37
Last modified: 17 Mar 2024 13:21
Export record
Altmetrics
Contributors
Author:
Charles Dupras
Author:
Terese Knoppers
Author:
Nicole Palmour
Author:
Elisabeth Beauchamp
Author:
Stamatina Liosi
Author:
Reiner Siebert
Author:
Alison May Berner
Author:
Stephan Beck
Author:
Ian Charest
Author:
Yann Joly
Download statistics
Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.
View more statistics