Table 1 Definitions of three virtuous approaches to be adopted during consent to clinical genetic testing
Virtue | Description of virtue | Practicing the virtue in the context of genetic testing | Illustrative Quote |
|---|---|---|---|
Openness | The spirit of open communication; open-mindedness about decision-making and ethical views | Giving patients unrestricted access to the HCPs’ knowledge and information, even if that means HCPs telling patients they do not have all the answers; that they do not know all the information; or that the information is uncertain. Not hiding behind providing medical ‘certainties’ or informational answers to patients, but acknowledging and explaining the uncertain nature of genetic testing. Part of openness is also talking to patients about the way information might be shared - for research or to benefit relatives and considering this in light of patient’s relational (emotional, cultural etc) context. | ‘You always tell your patient that’s what you’re going to do and you’re always transparent about what you are doing and why you’re doing it’ |
Honesty | Refusing to fake the facts of reality | The HCP being sincere with patients, not overstating the potential of genetic testing or creating false expectations, and being upfront about the uncertainty which surrounds much genetic testing. This differs from information-provision in that HCPs make clear when they are uncertain ie., when there is no information to give per se, and also because they have a conversation with patients, rather than simply imparting knowledge | ‘I think if you’re honest about it then they don’t feel cheated’ |
Trustworthiness | Being worthy of trust. People can count on you to do your best, to keep your word, and to follow through on your commitments | The HCP building a relationship with the patient such that the patient can rely and depend upon the HCP. In particular, the patient feels the HCP is treating them with respect, and that the HCP has considered the patient’s social, emotional and situational circumstances within their interactions with the patient | ‘I think it’s really important that your patient feels that they can trust the relationship that they’ve got with you’ |