Negotiating Genome-Wide Sequencing in Clinical Care: The Performance of Personalized Genomic Medicine in Cross-Cultural Perspective

Negotiating Genome-Wide Sequencing in Clinical Care: The Performance of Personalized Genomic Medicine in Cross-Cultural PerspectiveApplication No. 2018027 Aviad Raz (BGU, sociology)Stefan Timmermans (UCLA, sociology)

Short abstract in Lay TermsGenomic medicine envisions more personalized diagnosis and treatment, yet its application in areas such as cardiovascular and cancer diseases is still fraught with many uncertainties that effect patients and their families. With genomic medicine, the technology has arrived but the implications of many of the genetic variants are still not well understood. Our objective is to find out how families of diverse socio-demographic characteristics, in Israel and California, deal with this uncertainty; how clinicians and patients determine the clinical relevance of genomic results of uncertain significance; and how each side evaluates these encounters. By comparing risk communication between professionals and clients as well as between clients and their family members, we should be able to better understand the general (as well as local) issues involved in translating genetics to the public. The significance of our project stems from examining the multiple social factors that shape a new and highly acclaimed biomedical technology and the social impact of this genomic technology on patients and families, as it makes the transition from the lab to the clinic while retaining pervasive uncertainties and actionability gaps. This study will produce policy relevant recommendations about the social consequences of DNA sequencing for personalized medicine and the effects of various communication styles, disease type, and patient/family characteristics. In this manner this research will have a significant contribution to moving beyond global standardization to managing diversity in medical technologies.