DEBORAH MASCALZONI

PERSONAL INFORMATION

Position/Title: Lead and Senior Researcher in Bioethics (Institute of Biomedicine at Eurac Research), Senior Researcher (Uppsala University, CRB)

Address: EURAC Research, Institute of Biomedicine, Via Galvani 31, 39100 Bolzano, Italy

Tel: +39 0471 055 513

@: Deborah.Mascalzoni@eurac.edu; www.eurac.edu;

EDUCATION/POSITIONS

2000 Degree in Philosophy of Science (cum Laude), Thesis in Bioethics, 2000 “Philosophy of Medicine: who should decide about Therapy and Care”, University of Bologna, Italy

2001 Master degree in Environmental Education, Master Thesis, 2001 “Il Principio di responsabilitá in Etica ambientale (Environmental Ethics and the Imperative of Responsibility)”, University of Bologna, Italy

2002 Awarded position as a doctoral student in Bioethics at CIRSFID (Centro Interdipartimentale di Ricerca in Storia del Diritto, Filosofia e Sociologia del Diritto e Informatica Giuridica), University of Bologna, Italy

2004 Fellowship in the Program of Science and Society, Harvard University (Kennedy School of Government with Prof. Sheila Jasanoff), Cambridge, USA

2006 Ph.D. in Bioethics at the University of Bologna (Faculty of Law), Italy “Informed Consent in Genomics: a new contract between science and society”, (Mascalzoni, Hicks, Pramstaller, & Wjst, 2008)

2006-2007 Appointment as Contract Professor for Bioethics at the Master in Geriatric Nursing (appointed by the University of Roma section of Bolzano, Claudiana)

2004-present Joint position as Senior Researcher in Bioethics at the European Academy: Institute of Genetic Medicine for the project CHRIS
Lead of the ethical-legal aspects of research projects at the Center of biomedicine at EURAC and especially committed with interactive dynamic consent projects in the biobank-based project CHRIS

2013-present Senior Researcher at Uppsala University, Center for Ethics and Bioethics. Management of the WP6 EU Project RD-Connect on Rare Disease

ACADEMIC ACTIVITIES

2002 Seminar on Environmental Ethics, Master in Environmental Education at the University of Bologna, Italy

2006 Advisory work in Ethical Panels on FP6 Projects, European Commission, Bruxelles, Belgium

2015-2017 Advisory Board Member for ADOPT, BBMRI>ERIC, EU Horizon 2020

2017-2019 Ethical Advisory Board Member for IMI DO IT Project.

2008-present Member of the Local Health System Ethical Board of Bolzano, Italy

2012-present Ethical Advisor for Telethon, Italy

2013-present Member of BBMRI Italy and Sweden ELSI Working Group

2014-present Member of the ELSI Group of BBMRI, Italy

2014-present Ethical Advisor for UNIAMO, Italy

2016-present Writing Group, “Code Of Conduct for the EU GDPR”, BBMRI ERIC.

2017-present Member of the Committee for Human Research and Bioethics (HUB) at IFOM (Fondazione Istituto Firc di Oncologia Molecolare), Milano, Italy

2019-present Member of the Taskforce “Genetic Testing in Parkinson’s Disease”, International Parkinson and Movement Disorder Society, USA.

2019-present Evaluation commission Fair, Sardinia, Italy.

2019-present Evaluation Panel, Ludwig Boltzmann Institute for Rare and Undiagnosed Diseases, Vienna

SELECTED PUBLICATIONS

In total 50 publications; total citations: 588; h-index: 12

    1. Budin-Ljøsne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen HB, Harris JR. Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe? Biopreserv Biobank 2016;14:241-8. [IF: 1.4]
    2. Mascalzoni D, Dove ES, Rubinstein Y, Dawkins HJ, Kole A, McCormack P, Hansson M. International Charter of principles for sharing bio-specimens and data. Eur J Hum Genet 2016;24:1096. [IF: 2.7]
    3. McCormack P, Kole A, Gainotti S, Mascalzoni D, Molster C, Lochmüller H, & Woods S. ‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research. Eur J Hum Genet 2016;24:1403-8. [IF:7]
    4. Budin-Ljøsne I, Teare HJA, Kaye J, Beck S, Bentzen HB, Caenazzo L, Mascalzoni D. Dynamic Consent: a potential solution to some of the challenges of modern biomedical research. BMC Med Ethics 2017;18:4.
      [IF: 2.0]
    5. Borry P, Bentzen HB, Budin-Ljøsne I, Cornel MC, Howard HC, Feeney O, Jackson L, Mascalzoni D, Mendes Á, Peterlin B, Riso B, Shabani M, Skirton H, Sterckx S, Vears D, Wjst M, Felzmann H. The challenges of the expanded availability of genomic information: an agenda-setting paper. J Community Genet 2018;9:103-116. [IF: 1.0]
    6. Gainotti S, Mascalzoni D, Bros-Facer V, Petrini C, Floridia G, Roos M,Taruscio D. Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues. Int J Environ Res Public Health 2018;15. [IF: 1.5]
    7. Howard HC, Mascalzoni D, Mabile L, Houeland G, Rial-Sebbag E, Cambon-Thomsen A. How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF). J Community Genet 2018;9:169-176. [IF: 1.0]
    8. Piciocchi C, Ducato R, Martinelli L, Perra S, Tomasi M, Zuddas C, Mascalzoni D. Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives. J Community Genet 2018;9:177-190. [IF:0]
    9. Mascalzoni D, Bentzen HB, Budin-Ljøsne I, Bygrave LA, Bell J, Dove ES, Kaye J. Are Requirements to Deposit Data in Research Repositories Compatible With the European Union’s General Data Protection Regulation? Ann Intern Med 2019;170:332-334. [IF: 5.3]
    10. Staunton C, Slokenberga S, Mascalzoni D. The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks. Eur J Hum Genet 2019;27:1159-1167. [IF: 2.5]