BIOUNCERTAINTY - ERC Starting Grant no. 805498
16th January 2020: Research Seminar - Joanna Smolenski (CUNY) - Germline Gene Editing and the Limits of Informed Consent
We have the pleasure to invite You for a research seminar in the ‘BIOUNCERTAINTY’ research project. The subject of the seminar is 'Germline Gene Editing and the Limits of Informed Consent' and it will be delivered by Joanna Smolenski from City University of New York. The seminar will take place on Thursday, 16th of January, at 5:30pm in room 25 of the Institute of Philosophy, 52 Grodzka Street.
Joanna Smolenski is a PhD student at City University of New York. In 2009, she defended her undergraduate thesis 'Why I Am Not A Destiny: The Implications for Nietzschean Exceptionalism Within the Paradox of Fatalism and Self-Creation' at Columbia University. Her research interests include ethics of genetic testing and ethical evaluation of the criteria for giving informed consent.
Abstract: Human beings have been using techniques like selective breeding to effect changes in plant and animal genes for thousands of years. While a large number of techniques fall under the umbrella of genetic engineering, I focus here on the newest and most currently contentious gene editing technology available— CRISPR/Cas9. As CRISPR/Cas9 has developed, it has not only been used to modify somatic cells, but far more controversially, those in the germline (i.e., reproductive cells). One of my core concerns regarding germline gene modification is the issue of proxy decision-making under uncertainty. As I aim to develop an account of what level of information is morally required for consent to be considered appropriately informed, my suggestion is that available information regarding the risks and benefits of germline gene modification fails to meet this level. While elsewhere I have published on this question for human subjects (The American Journal of Bioethics, December 2015) and gene drives (Cambridge Quarterly of Healthcare Ethics, January 2019), I would like to combine these two analyses into a holistic account of informed consent in editing the germline. While informed consent is the primary tool utilized to acquire permission for research participation, I shall argue that the epistemic limitations involved with germline editing and its irreversible iterated impact on future generations make providing legitimate informed consent to such research impossible. As such, informed consent cannot serve as the appropriate mechanism for securing research participation in this domain.
The seminar will be held in English.