Table 2.

Informed choice and risk communication co-design

Initial considerations — reflected in expert review and literature	Uncertainty:  • It is not clear how people will understand, misunderstand, or ascribe meaning to PGS • PGS is more deeply engrained in numeracy values than other types of genetic tests. Numerical risk information is notoriously difficult to understand (Davis et al. 2021; Peck et al. 2022) • Risk and risk perceptions may be embedded in lay beliefs or cultural values; thus, provider training in communication and cultural competency is needed (Hong et al. 2020; Hopwood 2000) • Providing genetic risk results for common, complex disease may have unintended consequences or reactions due to “essentialist bias,” i.e., the belief that one’s genes define their essence or identity (Dar-Nimrod and Heine 2011) • Integrating PGS into clinical care requires careful communication to avoid misinformed notions of genetic determinism and essentialism
Co-design considerations — community preferences and local adaptation	Community preference:  • Patients want providers to (1) contextualize risk in a personal way and (2) help them make meaning from it • Genetic information has both a cognitive and emotional layer of meaning that need to be attended to • If a person is told PGS is not deterministic, then their other contributory factors should also be explained • There is no right, wrong, or best way to explain complex risk. Everyone has different learning styles and health literacy. Providers should be trained to meet the needs of diverse audiences • Understanding a number is not as important as understanding the implications of it (e.g., personal utility, clinical utility) • The goal of risk communication should be to support informed choice (pre-test) or adaptation (post-test), not education
Programmatic decisions	Co-design lesson: • Provider training should focus on risk communication skills, not just the accurate recall of information • Patients will try to assimilate risk information with their personal and current experiences, as well as their personal and cultural values. Providers might have a duty to bridge these connections or patients may have maladaptive responses to test results • Professional development in these soft skills of assessing patient needs and values align with person-centered care