Reproductive and Genetic Privacy in Genome Editing

Guest speaker Professor JUDIT SÁNDOR, Central European University

Title : Reproductive and Genetic Privacy in Genome Editing  

Within the realm of reproductive technologies, genome editing is emerging as a promising, but also ethically challenging form of genetic intervention. Scientific ambitions and the desire of parents to have healthy children are pressing towards a hurried introduction of  various embryo screenings and  in the future even genome editing into the toolkit of reproductive technologies, but we need to consider its shorter- and longer-term ethical consequences in the life of the affected individuals and families. The challenges can be clearly demonstrated by the confrontation of two forms of privacy here: reproductive privacy and genetic privacy. Reproductive privacy concerns the parents’ right to self-determination in seeking to eliminate genetic risks within the family and to have a healthy child. The genetic privacy of the offspring, on the other hand, is compromised from the moment the decision on genetic intervention is made. The genetic make-up of the child is monitored and analyzed throughout already in prenatal life but also in follow up studies. Lulu and Nana, the twins born after their genome was edited, are subject to a longer-term medical surveillance and their health has become a global concern. As those persons whose genes were edited before being born were not able to give their consent to the procedure, the boundaries between parental rights and reproductive self-expression are inevitably blurred. As a consequence, parental self-determination should be reassessed and solutions for ex post facto information about the procedure and to provide assessment of therapeutic, lifestyle and reproductive consequences should be worked out in order to avoid further discrimination based on the genetic scores of individuals.

Judit Sándor is a full professor at the Faculty of Political Science, Legal Studies and Gender Studies of the Central European University (CEU), Budapest.  She has been teaching at three departments for 20 years and she was the supervisor of many successful PhD dissertations. She had a bar exam in Hungary, but she conducted legal practice also at Simmons & Simmons in London. She had fellowships at McGill (Montreal), at Stanford (Palo Alto), and at Maison de sciences de l’homme (Paris), at NYU (New York, as a Global Research Fellow). In 1996 she received Ph.D. in law and political science. Judit Sándor has been involved in many ethical and legal policy development. After her graduation from the Law School, she worked on the first informed consent forms in Hungary, with two molecular biologists she developed the first Bill on Genetic data in Hungary which has been later transformed to a Parliamentary Act.