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.
- health care facilities
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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 pandemic-related 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.
Points to consider
Table 1 lists, in no particular order, the ethical principles that when carefully applied to decision-making, 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:
Environment of practice
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 (Reasonableness)
Catchment area: coordination with local, regional or tertiary centres with limited resources or long wait lists could benefit patients provincially. (Inclusive and fair)
Hospital policy: hospital decisions may affect further staffing and redeployment decisions, as well as timing of in-person visits and visitor restrictions. (Responsive)
Clinic factors: staggering staffing to maintain social distancing and minimise patients in waiting rooms is a recommended consideration.2 (Responsive)
Availability of electronic medical records (EMR): EMR-based charts increase the ease of being able to work remotely. (Proportionality)
Remuneration model: provider remuneration, including the availability of virtual care billing codes, will affect how models of care can be maintained. (Accountable)
Nature of consult
Models of care: hybrid models of virtual and in-person care may be needed, including decisions to defer physical examinations, where appropriate, until initial investigations return.6 Consideration should also be made for patients requiring frequent follow-up and the optimal multidisciplinary, team-based approach. (Responsive, Inclusive and fair)
Priority: wait lists could be reviewed to ensure patients of higher priority receive necessary attention. A careful balance between new referrals and follow-ups is needed, particularly for follow-ups of known conditions where management is unlikely impacted. (Inclusive and fair, Non-maleficence)
Prenatal: timely access to prenatal testing, imaging and specialty care should be considered essential. While preconception, soft marker or other screen-positive counselling can be done virtually, in-person assessments for severe congenital anomalies or significant discussions ought to be considered. Carrier screening could be carefully considered based on whether this information would change management.
Paediatric: inpatient genetic consultations ought to continue, either in person or virtually. Telephone advice for first-tier testing could also be used. Priority for new referrals could be given to babies or young children, those with new clinical or molecular diagnoses or where there is significant parental anxiety.
Metabolic: urgent metabolic presentations, as well as those requiring in-person therapies or assessments, should continue to be seen. If possible, virtual care to maintain health and prevent decompensation should be prioritised.
Adult and cancer: individuals in the end of life may benefit from virtual prioritised care as a definitive diagnosis in an affected individual has implications for at-risk family members.
Other services: the availability of non-laboratory services from diagnostic imaging to developmental support and drug shortages need to be considered. (Stewardship)
Access to technology: for effective virtual care, the patient must have access to and comfort with reliable telephone or internet connection with an appropriate device. Those who do not have the digital literacy or access to video calls may not be able to benefit from visual aids important in genetic counselling.7 8 (Inclusive and fair)
Communication: translation solutions for virtual care, exceptions to visitor restrictions or in-person visits for individuals with hearing, vision or other difficulties should be included wherever needed. Other forms of communication with patients, such as asynchronous secure messaging, could be explored. (Inclusive and fair)
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)
Geography: as there are costs of travel to an in-person appointment, consideration should be made for virtual care when possible. (Reasonable)
Ability to wait: patients may be anxious to be seen or in contrast, may wish to defer their appointment. Other 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)
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)
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)
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.
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 (Transparency)
Burn-out and division of clinical responsibilities: providers should be mindful of downloading aspects of care to other providers under similar COVID-19 constraints. Provider well-being should be monitored and addressed. (Reciprocity)
Urgency: priority should continue to be given based on the urgency of the test, such as prenatal testing, work-up for suspected metabolic disorders, newborns with anomalies and diagnostic testing for conditions where there may be a change in management. Cascade testing of family members to sort out variant significance could be carefully reviewed for their informational value. (Reasonable)
Need: practical considerations, such as whether a patient has DNA already banked, should not be used in isolation in deciding which patients can be seen. Similarly, the risks and benefits of singleton over trio testing in limiting exposures should be balanced with diagnostic yield. Where appropriate, convenient sampling with home buccal kits or blood spots that mitigate exposure risk may be a safe alternative. (Non-maleficence)
Funding of genetic testing: there may continue to be differences in the approval processes for and turnaround times of out-of-country testing because of COVID-19. In the long term, the pandemic may exacerbate funding differences and will require ongoing monitoring. (Proportionality, Stewardship)
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 ‘genotype-first’ 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.
The authors wish to thank Randi Zlotnik Shaul for feedback on the manuscript. They would also like to acknowledge the critical review and feedback from the boards of the Canadian College of Medical Geneticists, Canadian Association of Genetic Counsellors, the Education, Ethics and Public Policy, and Clinical Practice Committees, especially and not limited to Mary Ann Thomas, Isabelle DeBie, Alessandra Cumming, Melanie Care, Ioannis Trakadis, Leanne Mercer and Joanna Lazier.
Contributors The conception of the document was by LC and ESYG with additional contribution to the design by AJD. Drafting, revising and final approval of the work were done by all authors. All authors agree to be accountable for all aspects of the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The extended version of this document was reviewed by the Canadian College of Medical Geneticists (CCMG) Education, Ethics and Public Policy, and Clinical Practice Committees and approved by the boards of the CCMG and the Canadian Association of Genetic Counsellors (CAGC).
Provenance and peer review Not commissioned; externally peer reviewed.
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