Governance of trust in precision medicine

On 23-24 November 2017, IRGC organised a two-day invitation-only expert workshop at Campus Biotech in Geneva on the subject of Trust and Precision Medicine.

In an open, facilitated discussion, 40 experts in the field of precision medicine, from various disciplines and backgrounds, convened to move forward an interdisciplinary and multi-stakeholder agenda for gaining insight into ways to build trust in precision medicine.

A lack of trust can be considered a risk in the development of precision medicine. To better understand such a risk, several questions were addressed during the workshop:

  • What is ‘trust’ and ‘trustworthiness’ in the era of big data and precision medicine? What are the risks if trust is lacking or incomplete? How can we achieve trustworthiness?
  • Could novel technologies help build trust?
  • What is the role and the responsibility of the medical sector in contributing to building trustworthy relationships with patients and citizens?
  • What is the role and the responsibility of the private sector in contributing to building trust?
  • Can trust be measured? How? Can it be mandated?

The workshop was organised with the support of the Swiss Personalized Health Network (SPHN) and the Swiss State Secretariat for Education, Research and Innovation (SERI).


  • Governance of trust in precision medicine, 2018, Workshop report
  • Background paper to the workshop by Afua Adjekum, Marcello Ienca, and Effy Vayena: What Is Trust? Ethics and Risk Governance in Precision Medicine and Predictive Analytics. Published in
    OMICS. 2017 Dec 1; 21(12): 704–710. doi: 10.1089/omi.2017.0156