SIENNA genomics team

This work is led by Uppsala University and involves researchers from University of Twente, Trilateral Research, Helsinki Foundation for Human Rights, European Network of Research Ethics Committees (EUREC), University of Granada, Ionian University, Federal University of Rio de Janeiro, Dalian University of Technology, Sciences Po and University of Cape Town.

Contact and more information

Uppsala University

Heidi C. Howard, Uppsala University

Heidi C. Howard, Uppsala University

Heidi C. Howard leads the ethical and legal analysis of  SIENNA's genomics work stream. She is currently a senior researcher at the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. She received her undergraduate and doctoral degrees in Biology from McGill University (Montréal, Canada). She continued her genetics training in psychiatric genetics at the Centre for Genomic Regulation in Barcelona (Spain) and at the Douglas Hospital in Montréal (Canada). Heidi C. Howard is a recognized expert in the research field of ELSI of genetics/genomics, especially regarding the responsible translation of new technologies in genetics and genomics from the lab to the clinic.

Contact: heidi.howard[at]crb.uu.se

Emilia Niemiec, Uppsala University

Emilia Niemiec, Uppsala University Centre for Research Ethics & Bioethics (CRB)

Emilia Niemiec investigates ethical, legal and social implications of genomics in SIENNA project. She is a post-doc at Uppsala University's Centre for Research Ethics & Bioethics. During her PhD (Erasmus Plus PhD Programme in Law, Science and Technology) she studied ethical and legal issues of whole genome sequencing. She conducted the first empirical study of direct-to-consumer offer of whole genome sequencing. Emilia holds degrees in Bioethics (MSc, University of Leuven) and Biotechnology (MEng, Warsaw University of Life Sciences).

Contact: emilia.niemiec[at]crb.uu.se

Santa Slokenberga, Uppsala University

Santa Slokenberga, Uppsala University

Santa Slokenberga, Uppsala University, contributes to the human genomics work stream. She received her LLD in medical law in November 2016. Her research focuses on the coexistence of the EU and Council of Europe in regulating health-related direct-to-consumer genetic testing. In addition, she has been teaching in the fields of EU law and medical law and since 2011, she is lecturing in several medical law related subjects at Riga Stradins University (Latvia) for both undergraduate and graduate students, including supervision. Since 2014, Santa Slokenberga teaches the summer school course “Comparative human rights in healthcare” at Yale University. Prior to starting her doctoral studies, Santa Slokenberga worked as a legal advisor for Deloitte Latvia.

Contact: santa.slokenberga[at]jur.uu.se

Solveig Fenet

Solveig Fenet, Centre for Research Ethics & Bioethics (CRB), Uppsala University

University of Granada

Javier Valls Prieto, University of Granada

Javier Valls Prieto, University of Granada

Javier Valls Prieto is a Permanent Professor at the Inter-University Andalusian Institute of Criminology and at the Department of Criminal Law at the University of Granada, Spain. In this period of time he has participated in 6R+D projects. He was Head of the Master program on Criminality and Social work with young people from 2008-2010, in which he was in charge of the privacy and data protection system. He also worked in the design of the Privacy Impact Assessment in the use of Data Mining in the ePOOLICE project. He is Director of the Technology and Law Laboratory of the University of Granada.

Contact: jvalls[at]ugr.es

Olga Campos

Olga Campos, University of Granada, contributes to the Spanish studies in SIENNA.

Trilateral Research

Rowena Rodrigues, Trilateral Research (deputy coordinator)

Rowena Rodrigues, Trilateral Research (deputy coordinator)

Rowena Rodrigues, Research Manager, joined Trilateral Research in 2011. Her areas of expertise and research interests include: privacy and data protection (law, policy and practice), privacy certification, security and surveillance, comparative legal analysis, regulation of new technologies, ethics and governance of new and emerging technologies, and responsible research & innovation. She has published book chapters in Policy Press, Routledge, Springer and articles in journals such as the Computer Law & Security Review, European Journal of Social Science Research, International Data Privacy Law, International Review of Law, Computers and Technology and the Journal of Contemporary European Research. At Trilateral, she has contributed in various capacities to EU research projects (e.g., SATORI, PULSE, IRISS) and provides consultancy to the private sector. Rowena Rodrigues has a PhD in law from the University of Edinburgh. She leads SIENNA's work on methodological and theoretical foundations.

Contact: rowena.rodrigues[at]trilateralresearch.com

Anaïs Rességuier, Trilateral Research

Anaïs Resseguier

Anaïs Rességuier is Research Analyst at Trilateral Research focussed on the ethics of new technologies. Her main research interests include the interface of the ethical inquiry and the social sciences and how societal challenges can be addressed; the socio-political implications of emerging technologies; and responsible research and innovation. She previously conducted research in the humanitarian sector and on the concept of care more generally. She has completed a PhD in Political Theory from Sciences Po Paris. She holds an MA in Philosophy from the Sorbonne University and a MSc in Forced Migration from the University of Oxford. 

Contact: anais.resseguier[at]trilateralresearch.com

Helsinki Foundation for Human Rights

Zuzanna Warso, Helsinki Foundation for Human Rights

Zuzanna Warso

Zuzanna Warso is responsible for the legal and human rights research, and she is coordinating the work on generalizing the project’s results. Since 2011 she has been working as a lawyer at Helsinki Foundation for Human Rights. In her work she explores intersections of human rights and technology, with a particular focus on the issue of women’s rights. Zuzanna Warso passed the bar exam in April 2017. She is a member of the Women’s Rights Group by the Polish Bar Council. In 2017, she was been awarded the Marshall Memorial Fellowship by the German Marshall Fund of the United States.

Contact: zwarso[at]hfhr.org.pl

Konrad Siemaszko

Konrad Siemaszko, Helsinki Foundation for Human Rights.

European Network of Research Ethics Committees

Lisa Tambornino, European Network of Research Ethics Committees

Lisa Tambornino, European Network of Research Ethics Committees

Lisa Tambornino studied philosophy, psychology and law at the University of Bonn. She obtained her PhD in philosophy in 2013. She has more than ten years of experience in working in interdisciplinary fields – in research, writing/editorial, project management and teaching. She was researcher and lecturer at the Jülich Research Centre and the German Reference Centre of Ethics in the Life Sciences. Currently, she is
research assistant at the EUREC Office. EUREC will lead the development of the SIENNA proposals and will contribute in many other ways to the projects access, e.g. by definig the approach for analysis and development of research ethics protocols and professional ethical codes and creating a survey of REC approaches and codes for human enhancement. EUREC represents RECs and associations of RECs in nearly all EU Member States. EUREC will work with the other partners and its own members to develop operational guidelines for research ethics for the three technologies.

Contact: tambornino[at]web.de

Dirk Lanzerath, EUREC

Dirk Lanzerath, leads SIENNA proposals work stream

Dirk Lanzerath is Secretary General of EUREC and Head of EUREC Office; Managing Director of the German Reference Centre (DRZE) of the University of Bonn; graduated in Biology and Philosophy; lecturer at the University of Bonn (Philosophy, Ethics, Bioethics), guest lecturer at Loyola Marymount University, Los Angeles, CA (Ethics). As Faculty member of The Bioethics Program (Advanced Certificate Program in Research Ethics: Central and Eastern Europe) of The Graduate College of Union University Schenectady, Schenectady, NY, and Mount Sinai School of Medicine, New York, NY (USA) he is very experienced in teaching research ethics in Central and Eastern European Countries. Research areas: ethics, bioethics, philosophy of science, philosophy of biology. Dirk Lanzerath is experienced in European networking processes and in coordinating large EC-Projects. He is coordinator of the ENERI project. Dirk Lanzerath leads the work stream developing proposals from the project.

Contact: lanzerath[at]eurecnet.org

Sciences Po

Robert Gianni, Sciences PO

Robert Gianni, Sciences PO

Dr Robert Gianni is a political and social philosopher working at Maastricht University and Ethics Expert for the European Commission and Eureka Eurostars. He has been working on the relation between science and society with a particular focus on their regulations and their intersections. The current aim of his research is to critically scrutinize the different registers of justification of technological innovation and their repercussions for democratic systems. Some of his latest works include: Gianni R., (2019), ‘Chosing Freedom: ethical governance for responsible research and innovation’, in von Schomberg R. ,Hankins J., International Handbook on Responsible Research and Innovation, Edward Elgar, Cheltenham, & Gianni R., Pearson J., Reber B., (eds.) (2018), Responsible Research and Innovation. From Concepts to Practices, Routledge, Oxford.

Contact: r.gianni[at]maastrichtuniversity.nl

University of Cape Town

Jantina de Vries, University of Cape Town

Jantina de Vries, University of Cape Town

Jantina de Vries will lead the South African contribution to the SIENNA project. She is a Senior Researcher in Bioethics at the University of Cape Town and obtained a DPhil at the University of Oxford. Her work focuses on developing ethical best practice for genomics research in Africa, and has contributed to developing an evidence base for best practice in informed consent for African genomics research, investigating ethical challenges relating to the sharing of African samples and data and exploring what constitutes fairness in African genomics research collaborations.

Contact: jantina.devries[at]uct.ac.za

Ionian University

Maria Bottis, Ionian University

Maria Bottis is an Attorney-at-law and an Associate Professor, School of Information Science and Informatics, DALMS, Ionian University. She graduated from Arsakeion High School of Patras with High Honors (20/20 graduation certificate, first of class) and had been under full tuition scholarship throughout high school. In 1985, she topped the Greek National examinations for entrance in all Universities/all disciplines with 1998 points over 2000, and entered in Athens Law School first. She is a Honors graduate of Athens Law School (graduated first of class). She is a holder of a LL.M degree (Cambridge Law School UK) a LL.M degree from Yale Law School and a PhD on medical information law and ethics from the University of Athens.'

Contact: botti[at]otenet.gr

Dalian University of Technology

Federal University of Rio de Janeiro

University of Twente