Expertise, empathy and ethical awareness: ideals of genetic counseling based on framing of genetic information in international guidelines

Rantanen E, Pontinen S, Nippert I, Sequeiros J, Kaariainen H

Abstract

Along with the increase in genetic testing, it has become ever more important to assess the meanings attributed to genetic information in healthcare and in society. The objectives of this article are: (1) to review international guidelines pertaining to genetic counseling; (2) to analyze how genetic information is constructed in these documents; and (3) to summarize how these constructions affect the ideals and practice of genetic counseling. Guidelines were collected by examining the websites of different political, ethical, professional and patient organizations. The constructions of genetic information in all the 56 guidelines collected were examined with a frame analysis. In order to identify frames, the documents were coded with the software package QSR NUD*IST, and compared to each other. The constructions were sorted into three frames, diagnostics, life planning and threat, through which different discussions on the role of genetics are reflected, and the ideals of genetic counseling are defined.