Studying Vulnerable Populations Through an Epigenetics Lens: Proceed with Caution

  • Katie Saulnier Social Sciences and Humanities Research Council, Ottawa, Ontario, Canada https://orcid.org/0000-0002-0721-6280
  • Alison Berner Barts Cancer Institute, Queen Mary University of London; Gender Identity Clinic, Tavistock and Portman NHS Foundation Trust, London, UK https://orcid.org/0000-0002-1132-0275
  • Stamatina Liosi Medical Genomics Laboratory, University College London Cancer Institute, London, UK
  • Brian Earp Yale-Hastings Program in Ethics and Health Policy, Yale University and The Hastings Center, New Haven, CT, USA
  • Courtney Berrios Genomic Medicine Center, Children’s Mercy Research Institute, Kansas City, MO, USA https://orcid.org/0000-0001-5170-070X
  • Stephanie O.M. Dyke McGill Centre for Integrative Neuroscience, McGill University, Montreal, Quebec, Canada
  • Charles Dupras Department of Social and Preventive Medicine, School of Public Health, University of Montreal, Montreal, Quebec, Canada
  • Yann Joly Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada
Keywords: epigenetics, research ethics, Social science research, vulnerable populations, confidentiality, privacy

Abstract

Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are concerned with demonstrating how, in targeting certain populations for epigenetic research, this research may be pathologizing socio-cultural and medical practices in those populations in a way that increases their vulnerability. Using a case study approach, this article examines three vulnerable populations currently of interest to epigenetic researchers – Indigenous, autistic, and transgender populations – in order to highlight some of the challenges of conducting non-stigmatizing research in epigenetics.

Author Biography

Katie Saulnier, Social Sciences and Humanities Research Council, Ottawa, Ontario, Canada

Corresponding Author: Katie Saulnier, kmsaulnier@gmail.com

Published
2022-03-01
How to Cite
[1]
Saulnier K, Berner A, Liosi S, Earp B, Berrios C, Dyke SO, Dupras C, Joly Y. Studying Vulnerable Populations Through an Epigenetics Lens: Proceed with Caution. Can. J. Bioeth. 2022;5:68-7. https://doi.org/10.7202/1087205ar.
Section
Articles