Integrating genomics into the care of people with palliative needs: A global scoping review of policy recommendations

Background:
Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integrating genomics into palliative care has not received the critical attention it requires. Health professionals report a lack of policy guidance to support them to overcome practice barriers to identify palliative patients who are eligible for genetic testing, provide genetic counselling, and facilitate genetic testing or DNA storage.
Summary: To identify policy recommendations related to (1) integrating genomics into the care of patients with palliative care needs and their families and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomic policies mentioned palliative care in the background information. Across all policies, “delivering family centred care” was the most frequent recommendation related to care of the family unit (n = 62/78, 79.5%).
Key Messages: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals. Without funding, delivering the benefits of genomics to patients and relatives is more difficult for health professionals. Framing recommendations about genomics as family centred care may resonate with genomic and palliative care stakeholders. These findings highlight an opportunity to improve the policy landscape and access to genomic information for patients with palliative care needs. We call for incorporation of appropriate recommendations into palliative care and genomic policy.