About event
'Healthy Futures' themed seminar series hosted by the Deakin Science and Society Network
Please join us for seminar #3 in the ‘Healthy Futures’ seminar series hosted by the Deakin Science and Society Network (SSN). You can join the conversation on Twitter by following us at @SSNDeakin and using the hashtags #SSNseminar #HealthyFutures.
Title:
The rise of consumer multi-omics: emerging concerns
Abstract:
Ethical, legal, and social implications of consumer genomics have been amply discussed over the past two decades. Recently, epigenetic and microbiomic testing companies have stormed into the market and contributed to a rapid expansion of direct-to-consumer testing practices and discourses. The rise of ‘consumer multi-omics’ marks a significant expansion of the direct-to-consumer industry in terms of its focus, from the narrow detection of informative yet stable inherited molecules, to a broader search for information about individuals, including about their lives (i.e., their exposures, lifestyle and history), and this time based on the analysis of dynamic biological changes. Yet, the potential ethical, legal, and social implications of direct-to-consumer epigenetic and microbiomic testing have been overlooked. In this seminar, I will discuss emerging concerns related to scientific and clinical validity, medical relevance, informed consent, privacy and confidentiality, data governance, and non-discrimination. My presentation will be based on the results of a content analysis of the websites (product description, promotional messages, privacy policy, and terms of service) of five epigenetic and seven microbiomic testing companies, conducted in the context of a one-year research project (2019-20) funded by the Office of the Privacy Commissioner of Canada.
About the speaker:
Charles Dupras, B.Sc., M.Sc., Ph.D., holds a master’s degree in Molecular Biology, a PhD in Bioethics, and is currently Academic Associate at the Centre of Genomics and Policy (CGP) at McGill University (Canada). His thesis explored the potential epistemological, ethical, legal, and social implications of research in epigenetics. Charles has published extensively on the topic. As part of his current work at the CGP, he is interested in laws and public policies potentially applicable to – or to be amended to accommodate findings about epigenetic mechanisms, such as DNA methylation. The main objective is to ensure that regulations, such as the recent Canadian Genetic Non-Discrimination Act (2017), and existing guidelines for the ethical conduct of genetic research (e.g., data governance and privacy protection), apply consistently and justifiably to epigenetic information. Charles’ work notably touches to potential non-medical applications of epigenetic technologies in different contexts such as insurance, immigration, forensics, direct-to-consumer testing, as well as national defense and security.
About the discussants:
Christopher Mayes is a DECRA Research Fellow in the Alfred Deakin Institute at Deakin University. His research interests include the history and philosophy of healthcare, bioethics, and political theory. His current research is on the history of bioethics in Australia and its contributions to regulatory frameworks, legal reform, and public discourse in matters of life and death. He is the author of Unsettling Food Politics: Agriculture, dispossession, and sovereignty in Australia (Rowman & Littlefield: 2018) and The Biopolitics of Lifestyle: Foucault, ethics, and healthy choices (Routledge: 2015).
Associate Professor Jeff Craig is a Lecturer in Medical Sciences at School of Medicine at Deakin University, Waurn Ponds, Victoria. Prior to this, he spent twenty years as a researcher at the Murdoch Children’s Research Institute, Melbourne. He studies the role of epigenetics in mediating the effects of early life environment on the risk for chronic disease. He is currently developing epigenetic biomarkers from easy-to-collect biosamples.
About the chair:
Neera Bhatia is an Associate Professor in Law at Deakin University. She has previously held the role of Director of Research in the Deakin Law School. She is the author of ‘Critically impaired infants and end of life decision making: Resource allocation and difficult decisions’ published by Routledge Cavendish (UK). Her research interests are in the area of end of life decision making for infants and children, organ donation, euthanasia and more recently cryonics.
Watch the seminar:
Seminar will be available to stream on YouTube live. Access using the live link: https://youtu.be/WIuOlgT5hIs
Date/time: Wednesday October 28th, 10am – 11:30am (Australian Eastern Daylight Time, GMT+11)
Q&A with the speaker to follow. To send questions/participate in the chat, you’ll need to sign-in using a YouTube account.
The seminar will be recorded and available to watch on the SSN YouTube channel after the Livestream.
If you have any questions, please send to ssn-info@deakin.edu.au.
Event Contact:
ssn-info@deakin.edu.auShare