Lecture RRI and genome editing for congenital deafness – Stevienna de Saille at KULeuven

On June 22 Stevienna de Saille (Research Fellow in the Institute for the Study of the Human at the University of Sheffield, UK) will give a lecture on ‘Applying ‘Responsible Research and Innovation’ to genome editing for congenital deafness: questions and conundrums’.
Responsible Research and Innovation (RRI) is a policy framework advocating attention to the development of new technologies, particularly to the potentially unequal social distribution of benefits, burdens and risk, and to engaging the public in the governance of research and innovation. Although not always calling itself RRI, these precepts have formed the basis of a global debate about the social and ethical implications of editing the human genome, particularly for making changes which can be passed to future generations. However, despite a trajectory of research focused on treating genetic deafness, the Deaf (i.e. sign-using) community has so far been largely excluded from these discussions. In this seminar I will discuss the early stages of a project researching how the Deaf community’s experience with the use of cochlear implants (CIs) may (or may not) help to develop an RRI-inflected discussion about the unequal distribution of benefits and risks of genetic editing for deafness, particularly on a community which sees itself as a linguistic minority rather than a disabled population. The project aims to develop its questions in close collaboration with Deaf community groups in Belgium, considering how the specific history of CIs in this country may inform perspectives on genome editing, and facilitating the inclusion of Deaf perspectives in the wider debate around governance of genome editing in Europe. Its second aim is to help develop Deaf community discussion of biomedical innovation using techniques which are projected to enable precise ‘editing’ of the genome, potentially at the embryonic stage, to ‘cure’ genetic deafness.
        11h00 – 13h00
        Meeting Room Sociology 02.163 (Faculty of Social Sciences, Parkstraat 45, Leuven)
Details about the guest lecture can be found on our website: http://soc.kuleuven.be/ceso/life-sciences-society-lab
Open to everyone! Please confirm your attendance by email: Annet Wauters

Author: B.STS

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