A growing number of medical specialties are providing genomic care to patients. Just like any form of clinical care, genomic care carries benefits and risks. Safeguards help ensure patients receive high quality, safe care and should be carefully considered.
Melbourne Genomics projects provided valuable insights about safeguarding genomics in Victoria’s health system. We found that safeguards take many forms and can be grouped into three categories: guardrails, supports, and workarounds.
Guardrails
In genomic care, guardrails provide a systematic mechanism for safe and effective care and typically require organisation-wide change.
A guardrail in practice
In one example, an existing multidisciplinary team was expanded to include consensus on appropriate genomic testing and care when fetal conditions were found during pregnancy. The patient’s case had to be presented at this meeting before they were able to access funded genomic testing, offering a guardrail to ensure high quality care.
Supports
Supports are added to existing ways of working to help clinicians navigate new practices.
Examples
These tools inform and support clinical decision making and action.
- Access to expertise
This may include colleagues, peers and genomics experts, both formally and informally.
- Multidisciplinary meetings
These meetings provide collective advice to the clinicians who attend and can be used to guide clinical decision making.
Workarounds
When clinicians hit obstacles in systems and processes, they may put workarounds in place to safeguard care. Though they may appear to be effective solutions to an immediate problem, these processes are not always reliable — introducing unnecessary risks and increasing workloads. When workarounds are used, consider engaging with other hospital departments and leaders to find better solutions.
A workaround in practice
Because genomic tests are not yet systematically embedded in patient records at all hospitals, genetic counsellors implemented manual follow-up processes as a workaround to these system gaps, including:
- Ringing labs to check if a report has been released
- Using multiple channels to distribute results to relevant clinicians
- Copying decisions or findings into the patient’s medical record
- Checking through notes to see if results have been disclosed to patients.
While these processes may offer a temporary solution, they are time consuming and can introduce unnecessary risks. A systematic approach would offer a more reliable and efficient safeguard.
Read more about the safeguards used by clinical projects.
Key considerations
- Safeguarding is essential to any form of healthcare, including genomics.
- A fully considered model of care, which pays appropriate attention to risks, resources, processes, roles and responsibilities, will help services identify guardrails for safe and effective genomic care.
- A care pathway that depends on workarounds to maintain safe and effective care is unlikely to be as effective as a more systematic response.
Need support to safeguard genomic care?
The Genomics and Your Hospital Toolkit can help you identify risks and appropriate responses.