Making informed choice

Reframing how people are positioned as being legitimate knowers for making informed choice. 

Genomic medicine is a complex area. It is a technology which can screen someone’s entire DNA sequence. In the context of prospective parenthood, people can be in the position of deciding to have this type of screening.  As participating in genomic medicine (as healthcare consumers and/or in research) grows it is essential that people’s agency and epistemic credibility are upheld; for example, in research that explores the use of decision aides, uptake of screening or testing, preferences for how any findings from testing or screening are returned.

In Western society, education and employment are often viewed as indicators of intelligence and/or social status. Such epistemic positioning could be conferred to people in practice, affecting what or how information is shared, or not, by a practitioner based on assumptions about someone’s ability to ‘understand’ because of their educational attainment (or other characteristic). Education and employment status would better used as contextual variables for, indicators of, social privilege within the biomedical hegemony. Race is a social construct premised on colonial and imperial thinkings, and used as a, albeit poor, proxy for social class, culture and genes.

Describing or reporting findings by, or to, ethnicity/race, also has the added potential to marginalise (racialise); positioning people as the ‘problem’ rather than history (e.g., colonisation), social structure (e.g., privileging whiteness), or organisational racism that prevents equal access to health care, and education.