Dying at home of Covid-19: Meeting the need for home-based care.

Despite the increased burden of Covid-19 on older adults, ethical and public health frameworks lack adequate guidance for elderly patients who manage severe, even fatal, illness at home. The U.S. Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) recognize the heightened risks of Covid-19 for older adults; however, both organizations presuppose that most cases of Covid-19 will be mild to moderate and recoverable at home. Yet, older adults are least likely to follow this trajectory. Older patients are more susceptible to experiencing severe illness at home from which they may not recover; and if they do seek medical care, they tend to suffer worse outcomes than younger patients in intensive care settings. Given their likelihood of severe illness, worse outcomes in intensive care settings, and potential difficulty accessing resources, frail, disabled, and otherwise vulnerable older patients may face Covid-19 at home without adequate resources, information, or support for home-based care. This editorial proposes three approaches to prevent needless suffering and ensure that this vulnerable population continues to receive needed care.

Longitudinal follow-up after telephone disclosure in the randomized COGENT study.

PURPOSE: To better understand the longitudinal risks and benefits of telephone disclosure of genetic test results in the era of multigene panel testing. METHODS: Adults who were proceeding with germline cancer genetic testing were randomized to telephone disclosure (TD) with a genetic counselor or in-person disclosure (IPD) (i.e., usual care) of test results. All participants who received TD were recommended to return to meet with a physician to discuss medical management recommendations. RESULTS: Four hundred seventy-three participants were randomized to TD and 497 to IPD. There were no differences between arms for any cognitive, affective, or behavioral outcomes at 6 and 12 months. Only 50% of participants in the TD arm returned for the medical follow-up appointment. Returning was associated with site (p < 0.0001), being female (p = 0.047), and not having a true negative result (p < 0.002). Mammography was lower at 12 months among those who had TD and did not return for medical follow-up (70%) compared with those who had TD and returned (86%) and those who had IPD (87%, adjusted p < 0.01). CONCLUSION: Telephone disclosure of genetic test results is a reasonable alternative to in-person disclosure, but attention to medical follow-up may remain important for optimizing appropriate use of genetic results.

In vitro fertilisation with preimplantation genetic testing: the need for expanded insurance coverage.

Technological advances in genetic testing have enabled prospective parents to learn about their risk of passing a genetic condition to their future children. One option for those who want to ensure that their biological children do not inherit a genetic condition is to create embryos through in vitro fertilisation (IVF) and use a technique called preimplantation genetic testing (PGT) to screen embryos for genetic abnormalities before implantation. Unfortunately, due to its high cost, IVF-with-PGT is out of reach for the vast majority of Americans. This article addresses an issue that has been underexplored in the medical ethics literature: the lack of insurance coverage for IVF-with-PGT.Within the US system, a key concept in insurance is that of medically necessary care, which broadly consists of diagnostic services and treatment services. In this article, I argue that IVF-with-PGT could be classified as either a diagnostic service or as a treatment service. To make this case, I show that IVF-with-PGT is similar to other types of services that are often covered by US insurance providers. In light of these similarities, I argue that the current system is inconsistent with respect to what is-and is not-covered by insurance. To promote consistency and fairness in coverage, like cases should be treated alike-starting with greater coverage for IVF-with-PGT.

Evaluating Web-Based Direct-to-Consumer Genetic Tests for Cancer Susceptibility.

PURPOSE: Recent years have seen direct-to-consumer (DTC) genetic testing for cancer susceptibility change dramatically. For one, a new model now dominates the market where tests are advertised to consumers but ordered by physicians. For another, many of today's tests are distinguished from earlier DTC offerings for cancer susceptibility by their scope and potential clinical significance. This review provides a comprehensive overview of available DTC genetic tests for cancer susceptibility and identifies aspects of the DTC testing process that could affect consumers' ability to make informed decisions about testing and understand their results. METHODS: First, we provide an overview of each DTC genetic test for cancer susceptibility that includes information about cost; who orders it; whether variants of uncertain significance are returned; availability of genetic counseling; intended users; management of variant reclassifications; whether it is characterized as diagnostic, actionable, and clinically valid; molecular technique used; and Clinical Laboratory Improvement Amendments/College of American Pathologists status. Second, we identify six aspects of the testing process that could affect consumers' ability to make informed decisions about testing and interpret their results: How companies use certain terms (eg, medical grade or clinical grade); how companies use consumers' health information during the ordering process; the extent of genetic counseling provided by companies; companies' procedures for returning results; the role of company-provided ordering physicians; and companies' procedures for communicating variant reclassifications. RESULTS: On the basis of our review of companies' Web sites, we believe that consumers would benefit from more information about these aspects of testing. CONCLUSION: Providing this information would help consumers make informed decisions about whether to use a particular DTC genetic testing service and, should they choose to pursue testing, understand the implications and limitations of their results.

Genetic Privacy, Disease Prevention, and the Principle of Rescue.

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first-degree relatives-parents, children, and full siblings-are most likely to be affected. This is especially true for genetic mutations-like those in the BRCA1 and BRCA2 genes-that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at-risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients' moral duties to their at-risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients' genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients' most vulnerable relatives are informed of their genetic risks. Patients' duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue-the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn.