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BIOUNCERTAINTY - ERC Starting Grant no. 805498

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16 stycznia 2020: Seminarium badawcze - Joanna Smolenski (CUNY) - Germline Gene Editing and the Limits of Informed Consent

16 stycznia 2020: Seminarium badawcze - Joanna Smolenski (CUNY) - Germline Gene Editing and the Limits of Informed Consent

Interdyscyplinarne Centrum Etyki UJ (INCET) zaprasza na seminarium badawcze w ramach projektu BIOUNCERTAINTY. Wykład pt. “Germline Gene Editing and the Limits of Informed Consent” wygłosi Joanna Smolenski. Spotkanie odbędzie się w czwartek, 16 stycznia 2020 r. o godzinie 17.30 w Instytucie Filozofii UJ (sala 25).

Joanna Smolenski jest doktorantką na City University of New York. W 2009 roku obroniła undergraduate thesis 'Why I Am Not A Destiny: The Implications for Nietzschean Exceptionalism Within the Paradox of Fatalism and Self-Creation' na Columbia University. Jej zainteresowania badawcze to m. in. etyka badań genetycznych czy ewaluacja etyczna kryteriów udzielania świadomej zgody.

Abstrakt: 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. 

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