Charles Dupras Postdoctoral Fellow - McGill University |
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04.07.2022-27.07.2022
Promoting human rights in the postgenomic era: On the need to integrate epigenetics in international declarations on genomics and bioethics
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02.03.2020-15.03.2020
Promoting human rights in the postgenomic era: On the need to integrate epigenetics in international declarations on genomics and bioethics
The overall objective of my postdoctoral research project is to better understand how findings in – and concerns about – epigenetics should be implemented in Canadian legislation and policies. Sub-objectives are to: (1) identify areas of consensus and diverging views among scientific experts and ELSI scholars about the ELSI of epigenetics; (2) identify most pressing issues related to the translation of knowledge and regulation of epigenetic research and information; (3) identify specific laws, policies and guidelines that should be developed and/or amended in line with expert opinion; (4) provide policy-makers with innovative strategies and tools to integrate epigenetics into regulation and (5) develop a research agenda for future investigations about the ELSI of epigenetics.
This project is divided in two empirical phases, a Delphi and a documentary analysis: The classic Delphi study is a mixed method (qualitative and quantitative) type of inquiry developed in the 1950s to anticipate the impact of technology on warfare. The consensus-reaching function of the Delphi study aims to provide decision-makers with a useful evidence-based framework for action grounded in expert agreement. The themes explored in this Delphi study include for instance free and informed consent of participants in epigenetics studies; disclosure of incidental findings about epigenetic health risk; privacy in large open-access epigenetic databases; stigmatization and discrimination based on epigenetic information; distorted knowledge dissemination (e.g., media treatment); epigenetic toxicology assessments (e.g. pharmaceutical drugs, pollutants); and justice in epigenetic programming.
The second phase of my postdoctoral research project consists of a content analysis of regulatory documents. In order to point at gaps and flaws in – and opportunities for – knowledge translation in the Canadian regulatory environment, Federal and Provincial legislation and case law will be scrutinized for how they account for the most pressing issues identified by the Delphi. The Tri-Council Policy Statement-Ethical Conduct for Research Involving Humans (TCPS 2), as well as the currently debated Law Project S-201 against genetic discrimination, are but a few examples of documents that will be under investigation. A residency at the Brocher Foundation would allow me to extend the scope and reach of my analyses to international normative frameworks and guidelines, such as international human rights declarations.