Ethical, legal, and practical concerns about recontacting patients to inform them of new information: The case in medical genetics

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

“…Regarding patient autonomy, it was often reasoned that recontacting former patients with new actionable information may promote autonomy because such information may offer new opportunities to former patients. 15 Another argument put forward regarding patient autonomy was that consent to be recontacted can never be truly autonomous because patients do not know what kind of information might be disclosed. 20 The more recent literature relatively more often raised ethical arguments against a duty to recontact, thereby emphasizing respect for patient autonomy, which is thought to become even more important in light of WGS.…”

“…20 The more recent literature relatively more often raised ethical arguments against a duty to recontact, thereby emphasizing respect for patient autonomy, which is thought to become even more important in light of WGS. 49,54 Hunter et al 15 stated that there is a greater justification for recontacting former patients with definite, significant information about a life-threatening disease than for a small increased risk for a slowly progressive disease. They also noted that information may affect people differently, and therefore recontacting might be beneficial for some, whereas it might be harmful to others.…”

“…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.…”

“…In addition to psychological counterarguments, a minority of articles also mentioned other social arguments, for example, financial impact and consequences for insurance. 8,15,30,34 Ultimately, however, it is the practical aspects, such as knowing which patients to recontact and the availability of an infrastructure for recontacting, that were put forward most often as counterarguments for imposing a duty to recontact. These were the main reasons for many authors to conclude that although recontacting might be desirable, it cannot be regarded as a legal duty.…”

“…3,5,6,11,13,14,19 Ensuring patient privacy was, however, mentioned as a major concern in this respect. Finally, Hunter et al 15,26 suggested recording patient preferences regarding recontacting as part of the informed consent procedure at the initial consultation.…”