Exploring the duty to recontact patients

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

When new genetic knowledge could change the course of surveillance or treatment for a patient, is there a duty to inform that patient in the absence of an ongoing professional relationship? It’s a situation fraught with ethical, legal, and psychological issues that are far from clear-cut. A new systematic review examines what has been reported on the topic in the professional literature. Otten et al. found 61 articles that explore the duty to recontact patients in situations lacking an ongoing relationship between the patient and a health-care professional. Recontacting patients is currently not regarded as a “reasonable degree of care,” according to the review. In the absence of legal precedent, the authors sought out published professional guidelines and identified only one: the 1999 policy statement by the American College of Medical Genetics and Genomics on the duty to recontact, which the College holds is the responsibility of the primary-care physician. A 2007 revision argued that testing laboratories should make an effort to contact physicians of previously tested patients if new information changes the initial clinical interpretation of a sequence variant. The authors conclude that moving toward professional consensus could begin by focusing on specific situations in which recontacting patients would be regarded as the “standard of care.” The review could serve as a starting point for a new set of professional guidelines on recontacting in clinical genetic practice. —Karyn Hede, News Editor

Time to evaluate hidden harms in personal genomic testing

see The hidden harm behind the return of results from personal genome services: a need for rigorous and responsible evaluation

As personal genomic testing becomes more affordable and enters the cultural mainstream, it becomes imperative, Janssens argues in a Commentary, to explore the potential psychological harms of learning about distressing genetic health risks. The rapid pace of genomic research is not equaled by psychological and behavioral studies examining its effect on individuals who participate in such studies. Janssens notes that a few studies have shown that “early adopters can handle uninformative test results, that relatives of patients who choose to receive the test results can handle highly predictive results as well, and that genetic testing might be confusing for people from underserved populations.” These findings, she states, are not generalizable to situations in which genetic tests have higher predictive ability. In those situations, an absence of harm has not been demonstrated. Janssens further focuses on the often-ignored population of people who have the opportunity to participate in genetic testing but decline or drop out. This nonparticipation rate, which ranged from 39 to 76% in the studies she reviewed, suggests feelings of anxiety and distress that she terms “hidden harm.” Low participation rates were not considered in study conclusions, which she says is cause for concern. “Well-designed studies that investigate both benefits and harms are desperately needed if we are to ultimately realize the promise of genomic medicine,” she concludes. —Karyn Hede, News Editor