key: cord-1013984-eftlx42b authors: Chad, Lauren; Dawson, Angelika J; Goh, Elaine Suk-Ying title: Canadian College of Medical Geneticists (CCMG) points to consider: resuming genetic services in a pandemic—a summary date: 2020-11-16 journal: J Med Genet DOI: 10.1136/jmedgenet-2020-107394 sha: a5c98b625a5a1d33d6dffed69dd54e33d3630086 doc_id: 1013984 cord_uid: eftlx42b The COVID-19 pandemic has disrupted the provision of genetic care in Canada. With the public health effort to flatten the curve, many clinics have moved to virtual care for select populations of patients while triaging and postponing others. As genetic services are asked to gradually resume, a roadmap is needed to ensure clinical care decisions for at-risk patients are transparent and equitable, that postponed care is resumed and that patients with or waiting for a genetic diagnosis are not disproportionately affected or abandoned. The purpose of this document is to highlight the guiding ethical principles and stakeholder considerations in resuming genetic services to help guide the competing needs going forward of both limiting exposures while maintaining high-quality care. Considerations highlighted are (1) environment of practice, (2) nature of consult, (3) patient factors, (4) provider factors, and (5) laboratory factors. The intended users are those providing genetic care in a Canadian context with the recognition that there are clinic-specific and regional variations that will influence decision-making. While specific to the Canadian context, the ethical principles used to guide these decisions would be relevant for consideration in other jurisdictions. The COVID-19 pandemic has disrupted genetic service delivery in Canada, a specialty that traditionally relies on comprehensive dysmorphology examinations and sensitive in-person discussions. As part of the pandemic response, many clinics moved to virtual care, allowing healthcare providers to communicate with patients remotely by telephone, secure messaging and videoconferencing. 1 Others continued to see only what is considered 'urgent', though this definition varies among clinics. 2 Not surprisingly, the traditional 'phenotype-first' approach has also changed, with other pandemicrelated limitations in ancillary testing. As ambulatory services begin to resume, an opportunity to rethink care decisions has emerged, so that at-risk patients do not face additional barriers to genetic care. The purpose of this document is to highlight the guiding ethical principles and stakeholder considerations in resuming genetic services. Its goal is not to provide direct recommendations, but rather a genetics-specific roadmap to help guide decisions. The intended users are those providing genetic care in a Canadian context realising that there are evolving public health guidelines and clinic-specific and regional variations that will continue to influence care. Table 1 lists, in no particular order, the ethical principles that when carefully applied to decisionmaking, can aid in prioritisation. 3 4 Table 2 provides examples of changes prompted by the pandemic leading to shifts in medical genetics clinical principles and practices. The following are considerations: 1. Environment of practice a. Healthcare systems: will dictate the timing of resuming services as well as what ongoing support is in place (eg, virtual care, availability of personal protective equipment (PPE)). 5 (Inclusive and fair) c. Level of risk: certain patients may benefit from the continued ability to be seen virtually, even as ramp-up occurs, to decrease COVID-related morbidity and mortality. (Non-maleficence) d. Geography: as there are costs of travel to an in-person appointment, consideration should be made for virtual care when possible. (Reasonable) e. Ability to wait: patients may be anxious to be seen or in contrast, may wish to defer their appointment. Other Table 1 Ethical principles to guide resumption of genetic services 3 4 Ethical principle Description The reasons behind triaging decisions should be open and available. A reciprocal obligation exists to those who may be affected by certain decisions. Decisions about which care to provide and which to defer should be made on what is thought to be relevant. Decisions should remain flexible and nimble, as new information or data emerge. Decisions should be proportional to what can be reasonably provided. Decisions about which care to provide should be guided by patient and public health good. Decisions surrounding resumption of care should be responsible and explainable. The decision to restart services should ensure the needs of all patients and stakeholders. Non-maleficence Care decisions should be grounded in concerns for patient safety and welfare and minimise harm when possible. Examples of significant changes prompted by the pandemic leading to shifts in clinical principles and practices of medical genetics Prepandemic genetic service delivery Pandemic-related changes Patients physically seen in clinic based on geographic factors. Increased use and availability of virtual care: many patients now able to be 'seen' in their home environments without the need to travel to clinic. Coordination at the local or regional level could be considered to improve access to genetic care. In-person, comprehensive history taking and dysmorphology examinations that often require measurements or specific manoeuvres and sensitive in-person discussions. Increased use and availability of virtual care. Pandemic-related limitations in ancillary testing like physical examination, imaging or specialised laboratory testing. Shifting from a 'phenotype-first' approach may allow for new models of in-person, virtual or hybrid care where genetic testing may be offered earlier than in traditional models. 3. Patient factors Patients had to take time off work to travel and pay for parking and childcare to attend in-person visits. Public health guidelines to restrict non-essential visits. Increased use and availability of virtual care. Centring practices on protecting safety of patients. Accommodation of patient preferences for the location and timing of care, particularly for individuals who may belong to a marginalised or disadvantaged group, may be increasingly important to consider. 4. Provider factors Physicians, genetic counsellors and laboratory personnel traditionally worked in hospitals without the ability to work from home. Public health guidelines to restrict non-essential visits. Availability and support to work remotely. Centring practices on protecting safety of providers and preserving PPE. Consideration of leveraging the use of virtual care and remote working environments may balance provider needs and safety. Molecular genetic testing primarily done on a blood sample. Increased use of saliva and buccal swabs to decrease need to have physical contact for phlebotomy. Incorporating more non-invasive and convenient sample collection may be a safe and welcome shift for some types of genetic testing. PPE, personal protective equipment. factors, such as working from home, childcare needs and other social determinants of health, may affect the ability to be seen. Accommodation of patient's psychological needs and preferences, along with other contextual factors, should be considered. (Responsive, Inclusive and fair) 4. Provider factors a. Duty to care: while a duty to care and a fiduciary responsibility to patients exist for clinicians, how to enact and balance that duty between current and future patients with and without COVID-19 requires an ongoing discussion. 9 (Stewardship) b. Level of risk: discussion among clinic colleagues could be considered as to who would be best to see patients in person, taking into account colleagues with health conditions in themselves or close family members. 10 Compliance with infection prevention and control procedures access to appropriate PPE is also needed. 2 (Reciprocity) c. Comfort with technology: providers' comfort with virtual care may influence their decisions to see patients virtually. Education and skill building to address these competencies could be considered. Providers should also continue to consider the standard of care when offering virtual visits and the limitations this type of care may place. d. Ability to work from home: childcare needs and the provisions of appropriate support will be a consideration for providers with family commitments. Privacy and confidentiality need to be maintained when working from home and require the appropriate space, resources and tools to do this. 11 This document serves to highlight key points, ethical principles and identified stakeholders to consider when genetic services resume. Care decisions will require a careful calculus of all of the above considerations. While most genetic diagnoses may not be comparable to other urgencies in healthcare (certain metabolic diagnoses being a notable exception), these diagnoses can have significant impacts on health and may carry significant value to patients and families, so long as the healthcare system is able to support their downstream effects. The road forward for resuming genetic services should be gradual, flexible and responsive and include: ► A regional approach to providing care where decisions are made through a concerted effort across all stakeholders. ► A consideration of where a patient's genetic diagnosis may be situated within the broader resource-constrained healthcare setting. ► New tools to identify patients who can be seen virtually, and the continued use of technology to deliver care, recognising patient and provider factors. ► An understanding that COVID-19 has changed the way genetics is being practised. The virtual visits and 'genotypefirst' approaches prompt new ways of thinking critically about how to offer the best in-person, virtual or hybrid care. These new models require evaluation but may serve as an opportunity to build robust long-term solutions. ► A capturing of the downstream implications that may delay diagnoses and cause fragmented care as services resume, realising patients with suspected underlying genetic conditions may already belong to a marginalised or disadvantaged group. It is possible that with careful and thoughtful consideration of the above issues, the road forward is what was needed even before the pandemic: an inclusive, accessible and accountable path for accessing genetic care. Advice to the profession: COVID-19: virtual care Position statement Principles for the re-introduction of deferred services Stand on guard for thee. ethical considerations in preparedness planning for pandemic influenza A measured approach to planning for surgeries and procedures during the COVID-19 pandemic Telemedicine and virtual care guidelines (and other clinical resources for COVID-19 Collège des Médecins Du Quebec. Les téléconsultations réalisées PAR les Médecins durant La pandémie de COVID-19 Recommendations for regional health care delivery during the COVID-19 pandemic: outpatient care, primary care and home and community care College of Physicians and Surgeons of Saskatchewan Duties and responsibilities: scare resources: caring for patients during COVID-19 College of Physicians and Surgeons of Manitoba COVID-19 hub advice, support and medical-legal information, frequently asked questions, can I use virtual care to see patients during the COVID-19 outbreak? if so, what products should I use The authors wish to thank Randi Zlotnik Shaul for feedback