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Final Report Summary - SYSNORM (Systems Networks Norms)

Project overview

The project Systems|Networks|Norms (SysNorm) aims at making an innovative contribution to normative theory through research at the intersection of genomic science, philosophy, and ethics, in an environment that enables crossing the boundaries of the disciplines. At the same time, the project has a career development goal, by providing training-through-research in the setting of a Center of Excellence at Harvard University, and at the University of Groningen, University Medical Center Groningen, Department of Genetics.

Work in Progress & Achievements
In the first year of the project, the focus was on principles and methods in systems biology and on the implications of system biology for the concept of disease. While research into systems genetics has been ongoing, in 2013 the research focus shifted to emerging high profile opportunities within the Church lab. One outcome was the development of a new foundational argument for dealing with comprehensive human data sets, this work was published in Science. Furthermore, work has been done on the ethical implications of recent advances in ‘organ-on-chip’ technology and ‘organoid’ model systems, and on the conceptual and normative aspects of ‘genome-editing’ with the CRISPR-Cas9 technology, both new research areas.
In the second year of the project, a breakthrough discovery was made by a group of scientists at the host institution. Dr Lunshof, as the ethicist-researcher on site, had the unique opportunity to follow the development of the concept of ‘gene drives’ in real-time, acquiring insights at the cutting edge of the biosciences. The ‘gene drive’ technology allows the use of CRISPR-Cas9 RNA-guided genome editing for changing the genetic sequence of entire animal or plant populations, as altered DNA sequences in an individual are thus passed to the next generations. Since, she has been prominently involved with the exploration of the ethical and regulatory aspects of the ‘gene drive’ technology, at the host institution and in the Synthetic Biology working group of the Program on Emerging Technologies (POET) at the Massachusetts Institute of Technology (MIT). She was senior author of the earliest open access online publication on the topic by Scientific American. In the third year of the project, Dr Lunshof has continued her ground-breaking work on the analysis of the ethics of new directions in genome-editing, and she has been involved in further publication and outreach activities. Publication, in May 2015, of a Worldview commentary in Nature has put Dr Lunshof’s work in the spotlight, leading to media attention in the Netherlands and abroad. Genome editing and gene drives are currently high on the political agenda in the Netherlands, in Europe, and in the USA. With the MIT group, Dr Lunshof is involved in science & technology policy advice in the USA.

Training activities
Dr Lunshof has participated in the lab meetings of the Church Lab and the monthly meetings of the Center of Excellence in Genomic Science. She has presented at several USA and international conferences. She has attended the annual Harvard Clinical Bioethics Course in June 2014 (official CME credits) and the Harvard Catalyst Education Program course “Introduction Network to Medicine” in November 2014. She attended a 10-session course “The Physical Voice: Vocal Training for Teachers and Scholars” offered by the Harvard University Derek Bok Center for Teaching & Learning (July-August 2014), and a seminar series on career development skills offered by the HMS|HSDM Office for Postdoctoral Fellows. She has also mentored junior colleagues and trained in the instruction of Conduct of Science (as a co-instructor with Prof. Church) in both the first and the second year of the outgoing project phase. She initiated, together with Prof. Church, a revision of the graduate education materials on “Conduct of Science” that was adopted by the Course Directors and will be developed further. In August 2014, she developed together with her mentors and the SysNorm Scientist in Charge a skills training project, the “Whole Genome Training Project”, including bench exercises. The project involved a sequencing collaboration with the Broad Institute. Data were delivered in December 2014, and Dr Lunshof received further training in a bioinformatics and systems genetics collaboration between colleagues at the University Medical Center Groningen, Dept. of Genetics, and at Harvard Medical School. Genome interpretation training and systems genetics analysis are ongoing with the Genomics Coordination Center at the UMCG.

Significant results
The SysNorm project resulted in several high-visibility publications with focus in particular on aspects of the implementation of genomic technologies with societal relevance. Results of the project research were presented at a number of international conferences and workshops, with topics ranging from the sharing of genomic data to ethical issues in synthetic biology and molecular programming. In 2013 Dr Lunshof was invited by HUGO to give a lecture in Singapore and reinforced contacts in Japan. She presented at a Caltech workshop in Winter 2013. During the second year of the project, Dr Lunshof’s foundational article on the normative aspects of access to raw data was published in Science on 23 January 2014. She was invited speaker at a multidisciplinary conference at Arizona State University (ASU). Dr Lunshof gave an invited lecture at the Broad Institute of Harvard and MIT in a high profile seminar series in Spring 2014. In August 2014, Dr Lunshof became a Faculty Member of the newly established Center for Bioethics at Harvard Medical School. In December 2014, she was asked to serve on the Conduct of Science Steering Committee of the Division of Medical Sciences at Harvard Medical School. In the third year of the project two high profile articles were published, in Nature on the regulation of gene drives, and in Protein & Cell on ethical aspects of human germ line editing. In October 2015, Dr Lunshof was invited speaker, workshop leader and panelist at the 17th Annual PhD Conference of EMBL, Heidelberg, Germany.

Dissemination and Outreach
The publication of a Policy Forum in Science on 23 January 2014, was covered by media in the USA and in the Netherlands. Moreover, because of its potential societal impact, Science provided the authors with the unique opportunity of a live online video discussion about the article. Both the article and the recorded video discussion have been archived by Science and are online accessible. Dr Lunshof arranged for outreach and media information by the press officers of both host universities through a high visibility press release. In March 2014, Dr Lunshof was selected as a presenter in the “Euraxess Share: Broaden your Horizons!” event at Columbia University, NYC. On the occasion of the publication of the development of the ‘gene drives’, she managed media contacts in close collaboration with the press officers at both host universities. She is senior author of the Scientific American publication that aims at outreach to the broad public. In 2015, upon the publication of the Worldview in Nature, media outreach was managed together with the press officers of the University of Groningen. There were live and recorded radio interviews and media inquiries are ongoing. Dr Lunshof’s work on the normative implications of advanced genomics technologies is highly relevant for the societal debate and for policy making, nationally and internationally. The University of Groningen has provided the opportunity for further career development by extending the contract as of 1 January 2016, i.e. after the completion of the Marie Curie project.

- Oye KE, Maunsell J, Bar-Yam Lightfoot S, Esvelt K, Liu C, Evans SW, Kuiken T, Lunshof J, Mori Y, Palmer M. On Revision of the Coordinated Framework for the Regulation of Biotechnology. A White Paper Prepared for Consideration by the Biotechnology Working Group Emerging Technologies Interagency Policy Coordination Committee. 20 January 2016.
- Lunshof, JE. Human germ line editing – roles and responsibilities. Protein & Cell (2016) 7:7-10. Epub 28 October 2015.
- Lunshof, JE. Regulate gene editing in wild animals. Nature (2015) 521:127.
Barash CI, Lunshof JE. Reciprocity and transparency: Normative principles of data sharing. Applied & Translational Genomics (2014) 3:122-123.
- Lunshof JE, Chadwick R. Genomics, inconvenient truths and accountability. In: The right to know and the right not to know: genetic privacy and responsibility. Chadwick R, Levitt M, Shickle D (eds). Cambridge University Press, 2014.
- Kevin Esvelt, George Church, Jeantine Lunshof. “Gene Drives” And CRISPR Could Revolutionize Ecosystem Management. Scientific American (2014) July 17.
- Ball MP, Bobe JR, Chou MF, Clegg T, Estep PW, Lunshof JE, Vandewege W, Wait Zaranek A, Church GM. Harvard Personal Genome Project: Lessons from Participatory Public Research. Genome Medicine (2014) 6:10.
- Lunshof JE, Church GM, Prainsack B. Response to Letters. Science (2014) 343:969.
- Lunshof JE, Church GM, Prainsack B. Raw Personal Data: Providing Access. Science (2014) 343:373-374.
- Lunshof JE, Ball MP. Our genomes today: time to be clear. Genome Medicine (2013) 5:52-53.
- Lunshof JE, Gurwitz D. Guarding children’s genetic privacy. Correspondence. Nature (2013) 494:430.

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