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Candidate Gene Testing in Clinical Cohort Studies with Multiplexed Genotyping and Mass Spectrometry
Published on: June 21, 2018
Expanding the methodological repertoire: Integrating multimodal approaches in genetic counseling research
Malebo F Malope1,2, Megan Scott3, Tina-Marié Wessels2
1Division of Molecular Biology and Human Genetics, Department of Biomedical Sciences, Faculty of Medicine and Health Sciences, Stellenbosch University, Stellenbosch, South Africa.
Abstract:
This paper highlights the importance of methodological diversity in the field of genetic counseling (GC) and demonstrates how alternative multimodal approaches can serve as valuable additions to the GC research toolkit. We use examples from four separate qualitative GC projects, in the United Kingdom and South Africa, to highlight how different multimodal methods such as photo elicitation (PE) and graphic elicitation (GE), body mapping (BM), and conversation analysis (CA) can be incorporated into GC research and how they can produce novel ways for understanding practice, services, and patient experiences. The four projects aimed to understand the experiences of (1) a family with a genetic cancer syndrome, (2) pregnant women who chose to continue a pregnancy following detection of serious congenital abnormalities, (3) how women of advanced maternal age make decisions regarding amniocentesis, and (4) how genetic health practitioners communicate risk and manage uncertainty in GC consultations. Results provide insight into participants' moral discernments, notions of kinship and how emotional and social tensions are navigated during the offer of genetic testing. They further reveal how conversations are negotiated in clinical interactions and how practice may diverge from theoretical counseling frameworks. The purpose of this paper is to highlight how multimodal approaches were applied in these different projects and how they can be used to generate knowledge about GC experiences and interactions that extend beyond the collection of verbal or text-based data. We further propose how these methods can be useful for therapeutic purposes for exploring sensitive and traumatic events related to genetic conditions or testing. Used individually, or together with other approaches, multimodal methods such as visual, art, and interactional-based methods offer complementary insights into the layered, relational, and emotionally complex nature of GC. Embracing methodological diversity provides opportunities for richer, more holistic knowledge generation within an evolving and diverse GC landscape.
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