Centre for Research Ethics & Bioethics (CRB)

Feedback of individual genetic results in Europe still not feasible

2016-05-09

When it comes to genetic research, there is a growing consensus that research participants could be offered their individual results. Provided that they are scientifically robust, analytically valid and there is some clinical action people can take to prevent disease. Despite this, it is not common practice to do this in European genetic research. The reasons are many, one being the lack of legal frameworks, guidelines and resources to support feedback processes in research.

According to a paper that was recently published in Biopreservation and Biobanking, we need to coordinate efforts on a pan-European level if feedback of results to participants is going to be equitable, scientifically sound and socially robust.

Deborah Mascalzoni is one of the authors. According to her, we still lack European legal frameworks and professional guidelines, as well as financial, organizational, and human resources to support the feedback of results. If researchers are to give participants feedback on their results, there are some steps that need to be taken to facilitate the process. The authors believe we have to clarify the legal requirements and develop harmonized European best practices. But we also need to promote interdisciplinary and cross-institutional collaboration. They also suggest designing educational programmes and cost-efficient IT-based platforms. This work should involve research ethics committees. It is also necessary to document the risks and benefits of feedback processes.

The paper is based on the outcomes of a consultation with CHIP ME COST Action network members through an email survey and a workshop.

Read article in Biopreservation and Biobanking: Feedback of Individual Genetic Results to Research Participants: Is it Feasible in Europe?

By Josepine Fernow

Deborah Mascalzoni
Deborah Mascalzoni, Senior Researcher at CRB and one of the authors.

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