Résumés
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.
Keywords:
- epigenetics,
- research ethics,
- confidentiality,
- privacy,
- social science research,
- vulnerable populations
Résumé
L’épigénétique – l’étude des mécanismes qui influencent et modifient l’expression des gènes – fournit des informations uniques sur la façon dont l’environnement social et physique d’un individu a un impact sur le corps au niveau moléculaire, en particulier dans les populations victimes de stigmatisation et de traumatismes. Les chercheurs ont recours à des études épigénétiques pour comprendre comment les modifications épigénétiques entraînent des déséquilibres dans les résultats de santé des populations vulnérables. Cependant, l’étude des facteurs qui rendent une population épigénétiquement vulnérable présente des défis éthiques et méthodologiques particuliers. Nous nous attachons ici à démontrer comment, en ciblant certaines populations pour la recherche épigénétique, cette recherche peut pathologiser les pratiques socioculturelles et médicales de ces populations d’une manière qui accroît leur vulnérabilité. En utilisant une approche d’étude de cas, cet article examine trois populations vulnérables qui intéressent actuellement les chercheurs en épigénétique – les populations autochtones, autistes et transgenres – afin de mettre en évidence certains des défis à relever pour mener une recherche non stigmatisante en épigénétique.
Mots-clés :
- épigénétique,
- éthique de la recherche,
- confidentialité,
- vie privée,
- recherche en sciences sociales,
- populations vulnérables
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Parties annexes
Remerciements / Acknowledgements
Les auteurs remercient le financement du programme CEE-151618 des IRSC par le biais du Centre de cartographie épigénomique multidimensionnelle (CEM) de McGill.
The authors gratefully acknowledge funding of CIHR CEE-151618 via the Multidimensional Epigenomics Mapping Centre (EMC) at McGill.
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