The right not to know: Non-disclosure of primary genetic test results and genetic counselors' response.

As part of clinical genetic counseling practice, patients may request that their primary genetic test results be disclosed to someone else, such as a relative or referring provider, or request that results be disclosed to no one (non-disclosure). In making these requests, patients employ the ethical principle of the "right not to know," which argues that autonomous individuals can choose not to know relevant health information. Although the right not to know has been well-studied in medicine in general, and in the return of genomic secondary findings, we are not aware of other studies that have explored the return of primary genetic test results when patients request non-disclosure or disclosure to another individual. This study aimed to describe common clinical scenarios in which these requests occur, how genetic counselors respond, and what ethical considerations they employ in their decision-making process. We recruited participants from the National Society of Genetic Counselors' (NSGC) "Student Research Surveys and Reminders" listserv and conducted semi-structured interviews with 11 genetic counselors in the United States who described genetic counseling cases where this occurred. Interviews were transcribed and coded inductively, and themes were identified. Case details varied, but in our study data the requests for non-disclosure were most commonly made by patients with poor, often oncologic, prognoses who requested their test results be disclosed to a family member instead of themselves. Genetic counselors considered similar factors in deciding how to respond to these requests: patient autonomy, medical actionability of results for the patient and family, the relationship between the patient and the person to whom results might be disclosed, and legal or practical concerns. Genetic counselors often made decisions on a case-by-case basis, depending on how relevant each of these factors were. This study adds to the growing body of literature regarding patients' "right not to know" and will hopefully provide guidance for genetic counselors who experience this situation in clinical practice.

How should we address the inevitable harms from non-negligent variant reclassification in predictive genetic testing?

The process of interpreting genetic variants, in which experts use all available evidence to determine whether an identified variant is associated with a current or future disease, is both scientific and nevertheless subjective. In this paper, we summarize the existing evidence that any given variant could be reclassified and that such a reclassification could lead to harm. Furthermore, the racial gap in genetic databases could lead to a higher likelihood of harm for non-white patients. We also review recent legal analyses indicating it is unlikely that an individual who sues for restitution would be successful, especially in the absence of evidence of lab negligence. We then propose a compensation program for medical genetic tests to ensure that individuals who experience demonstrable harm due to a variant reclassification can be made whole financially. We conclude by discussing outstanding questions that must be answered for such a program to be feasible.

Rapid De-Escalation and Triaging Patients in Community-Based Palliative Care.

CONTEXT: The coronavirus disease 2019 (COVID-19) pandemic created a rapid and unprecedented shift in our medical system. Medical providers, teams, and organizations have needed to shift their visits away from face-to-face visits and toward telehealth (both by phone and through video). Palliative care teams who practice in the community setting are faced with a difficult task: How do we actively triage the most urgent visits while keeping our vulnerable patients safe from the pandemic? MEASURES: The following are recommendations created by the Palo Alto Medical Foundation Palliative Care and Support Services team to help triage and coordinate for timely, safe, and effective palliative care in the community and outpatient setting during the ongoing COVID-19 pandemic. Patients are initially triaged based on location followed by acuity. Interdisciplinary care is implemented using strict infection control guidelines in the setting of limited personal protective equipment resources. We implement thorough screening for COVID-19 symptoms at multiple levels before a patient is seen by a designated provider. CONCLUSIONS/LESSONS LEARNED: We recommend active triaging, communication, and frequent screening for COVID-19 symptoms for palliative care patients been evaluated in the community setting. An understanding of infection risk, mutual consent between designated providers, patients, and their families are crucial to maintaining safety while delivering community-based palliative care during the COVID-19 pandemic.

Marine mammal harvests and other interactions with humans.

The Arctic is currently undergoing rapid social and environmental changes, and while the peoples of the north have a long history of adapting, the current changes in climate pose unprecedented challenges to the marine mammal-human interactions in the Arctic regions. Arctic marine mammals have been and remain an important resource for many of the indigenous and nonindigenous people of the north. Changes in climate are likely to bring about profound changes to the environment in which these animals live and subsequently to the hunting practices and livelihoods of the people who hunt them. Climate change will lead to reduction in the sea ice extent and thickness and will likely increase shipping through the Northern Sea Route and the Northwest Passage and oil and gas activities in Arctic areas previously inaccessible. Such activities will lead to more frequent interactions between humans and marine mammals. These activities may also change the distribution of marine mammals, affecting the hunters. This paper has three parts. First, an overview of marine mammal harvesting activities in the different circumpolar regions provides a snapshot of current practices and conditions. Second, case studies of selected Arctic regions, indigenous groups, and species provide insight into the manner in which climate change is already impacting marine mammal harvesting activities in the Arctic. Third, we describe how climate change is likely to affect shipping and oil and gas exploration and production activities in the Arctic and describe the possible implications of these changes for the marine mammal populations. We conclude that many of the consequences of climate change are likely to be negative for marine mammal hunters and for marine mammals. Lack of adequate baseline data, however, makes it difficult to identify specific causal mechanisms and thus to develop appropriate conservation measures. Nonetheless, the future of Arctic marine mammals and human uses of them depends on addressing this challenge successfully.