Patient preferences regarding recontact by cancer genetics clinicians

Abstract

Patients evaluated in a colon cancer risk assessment clinic want updated information at a rate similar to those who participated in a colon cancer gene testing study. These findings have implications for the consultative nonlongitudinal nature of such clinics and suggest patient preferences for personally-tailored information could be labor intensive.

Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature

“…It was argued that recontacting could prevent professionals from being held liable for negligence by former patients, who might claim a need to know any new, medically relevant information. 1,5,15,28,59 The opposite issue-that patients could sue their HCP because recontacting breached their right not to know-was not explicitly addressed in the literature, although the importance of a patient's right not to know was often mentioned. Liability was, however, discussed as a counterargument by Letendre and Godard,20 reasoning that professionals may make themselves vulnerable if they cannot satisfy the expectations raised by embracing a recontacting policy.…”

“…9,30 The other six articles presented data from surveys and focus groups about the implementation of recontacting from the perspective of both counselors and patients. 12,14,25,28,49,59 These studies described opinions on recontacting as part of standard care; possible benefits, burdens and methods; and professional opinions about using genetic registries for recontacting patients. These data showed that opinions of professionals and patients generally differed on who is responsible for recontacting and on the ethical principles of recontacting.…”

“…32 This review showed that the application of recontacting in clinical genetic practice was not usually regulated by legislation or mentioned in guidelines and needs further discussion. In addition, two papers referred to two other guidelines when addressing the duty to recontact, 28,34 but after careful scrutiny neither of these guidelines explicitly addressed the duty to recontact.…”

Variants of uncertain significance in newborn screening disorders: implications for large-scale genomic sequencing

“…Much has been written about the duty to recontact, with very little consensus reached on the specifics of how and when to do so. 12,13 Most research agrees that, in theory, recontacting patients and providers with updated information is optimal; however, the process by which this should occur is not agreed on. 14 These complications argue that minimizing the need to recontact by providing accurate and complete information as early as possible is the best practice.…”

Whole genome sequencing as a diagnostic tool: Participant-centered consent

“…This raises the question of ''recontacting'': the re-establishing of contact with patients on the basis of new information derived from a stored genome sequence. This recontacting can be done either on the initiative of the doctor, or that of the patient [37]. A typical scenario involves unsolicited information and the patient being unaware of a purported genetic threat of some sort.…”