New Patient-Centric Perspectives in Medical

Research: Ethical and Governance Challenges


International Conference in Rome, 
28-29 October 201

We are looking for Speakers. e-mail us:


Over the past few years, there has been considerable debate over the regulations and guidelines required for the

governance of genomic projects and biobanks. Consent

from research participants is mandatory and it is now widely

accepted that there should be some form of public engagement to ensure public trust and to give the research endeavor

legitimacy. Although involvement of participants has been

regarded as important, the ways in which involvement has

been implemented in the research process has varied enormously depending upon different factors. More recently, patient groups and direct-to-consumer testing companies have

developed new forms of participant-centric approaches, by

using information technology that places the individual in control and at the centre of activities.

While consent and public deliberation strategies already provide a common ground for public participation and research

accountability in genomics, there is the possibility to use

these new forms of E-governance and IT-based tools and

apply them more widely. But to increase the involvement

of research participants beyond the consent form raises a

number of questions and challenges. To what extent should,

and do, participants want to be involved in the research process? Should participants be able to be more involved in the

oversight of a biobank or a research project? What influence

should participants have on research policy and trends in genomics? How much control by participants is actually ensured

through current research oversight mechanisms and how

much is desired by stakeholders and scientists? If the nature

of sequence information makes individuals potentially identifiable does this require a different relationship with research

participants? How can IT mechanisms assist in developing

tools and in supporting strategies to empower both researchers and participants? Could IT mechanisms change the way

that research is currently governed? How could IT help to

develop robust governance mechanisms for global research

and data sharing?

This conference will show case some new initiatives advancing a participant-centric approach and provide a forum for

critical discussion and appraisal.


We are looking for Speakers. e-mail us:


contract research organization

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