Our Studies : Program in Genome Ethics and Policy

Program in Genome Ethics and Policy

“Ethical integrity and good policy are the basis for scientific progress. We consider the ‘real-life’ context and impact of genomics in individuals, communities and our societies”.

The Program in Genome Ethics and Policy focuses on a multidisciplinary field of study, collectively known as ethical, legal and social issues (ELSi) of emerging sciences. Genomic medicine is a source of great promise for scientific and technological advances as well as for health promotion and for improving the well-being of populations. Yet, it is also the source of significant concerns due to its complex socio-ethical and legal implications, including their potential negative consequences for individuals, communities and humanity as a whole. Issues such as respect for individual choice and privacy, human dignity, discrimination and stigmatization, fairness in access, scientific integrity and freedoms are some of the areas the program centers on.

We work with our international network of academics together with patient communities (e.g. rare diseases and vulnerable or underrepresented populations) as well as all citizens, to bring awareness and to deal with the ELSi implications of genomics in research and medicine. We also work to promote engagement across communities to support scientific progress and to address their expectations, concerns, and priorities.

We have unique expertise in prospectively identifying (i.e. horizon scanning) and managing actual, perceived or emerging ELSi issues and challenges across the world. Thus, we monitor international policy/regulatory developments and assist organizations and individuals to ensure work is carried out in conformity with international ethical standards and national policy frameworks.

For a number of research studies, we have evaluated and developed custom ELSI Toolkits, policies and procedures for the design and conduct of genomic research or the integration of new genetic technologies into clinical practice.

For any questions regarding potential for consultation and educational services on ELSi issues and challenges please contact:

Rosario Isasi, JD, MPH
Phone: (305) 243-2365
Email: Risasi@miami.edu