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: rome@nbscience.com
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: rome@nbscience.com
0 Comments