Deborah Mascalzoni

 

B6

Dr. Deborah Mascalzoni

Deborah.mascalzoni@crb.uu.se

Title of Presentation

The CHRIS portal: Dynamic Consent in practice

 

Date and Place

Session B6

 

Speaker Biography

Dr. Deborah Mascalzoni is currently senior researcher at Uppsala University, Sweden and EURAC, Bolzano Italy. She is working on ELSI of biobanking and registries both in the rare diseases and in the population’s studies area. Her main research interests are genetics and new technologies including informed consent, patient communication, privacy in International consortia data sharing, access policies, patient’s engagement. Her main focus has been around rights of research participants and ways to actively foster them. She extensively worked in projects regarding research/participants dynamic interaction and dynamic consent in the project CHRIS (http://www.eurac.edu/en/research/health/biomed/projects/Pages/default.aspx.) She has written over 28 articles, 5 book chapters and published one book. She has an extensive record of teaching bioethics and research ethics internationally. Dr Mascalzoni is member on a number of advisory boards (vice President of the South Tyrol Health system ethical board , Member of the ELSI Group of BBMRI Italy, Ethical Advisor for Telethon Italy, Ethical Advisor for UNIAMO, National referent for legal and ethical issues WIKI Platform of BBMRI (Biobanking and Biomolecular Resources Research Infrastructure), Member of the ethical group of the International Genetic Epidemiology Society (IGES).

 

Abstract

The widespread use of mobile phones and Internet creates a fertile ground for the introduction of IT-based ELSI in Research. Starting in 2009, the Cooperative Health Research In South Tyrol (CHRIS study) invested in communication and ELSI. The CHRIS study is a longitudinal epidemiological and genetic population study, involving healthy individuals and families. CHRIS invested in creating a strong bond of transparency and trust with the participants with the implementation of stable communication channels and a dynamic consent approach mostly based on a personal portal accessible by participants and, as far tested on nearly 10,000 individuals.
Participants can access the portal for general information and updates and can access and manage their consent for changes, updates, and to provide new consent for further projects. Empirical data from semi-structured interviews and from a survey provide a first picture on how dynamic consent works for participants. Metadata on the choices made by them and a cost/benefit analysis shows how dynamic consent also works for science.