CentreForMedicalHumanities.org

New Patient-Centric Perspectives in Medical Research – Conference in Rome October 2011

posted on

Research Summary: Patient-Centric Medical Research Conference

Topic: Ethical and governance frameworks for genomic research and biobanks with participant-centered approaches
Event Type: International conference addressing regulatory guidelines and public engagement in medical research
Date & Location: 28-29 October 2011, Rome
Core Focus: Examines mandatory informed consent, public trust mechanisms, and technology-enabled participant control in research governance
Key Innovation: Showcases participant-centric models developed by patient groups and direct-to-consumer testing companies utilizing information technology
Evidence Grade: Policy-oriented framework discussion—emphasizes emerging best practices rather than clinical efficacy evidence
Primary Mechanism: Centers individual autonomy and informed participation through transparent governance structures and digital engagement tools
Scope Considerations: Addresses heterogeneous implementation challenges across genomic projects and biobanks requiring ethical and legal alignment

New Patient-Centric Perspectives in Medical Research: Ethical and Governance Challenges
International Conference in Rome
28-29 October 2011

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.

This conference will show case some new initiatives advancing a participant-centric approach and provide a forum for critical discussion and appraisal. Further details and the full call for papers can be found here.

Related Articles