Table 4.

Recommendations for developing precision oncology programs regarding how to manage and support patient decision-making about secondary germline findings (SGFs) from tumor genomic profiling (TGP)

● Develop educational materials about TGP and SGFs that can be easily disseminated to and understood by the close others (e.g., siblings, children, spouses/partners) who may play a role in a patient’s decision-making.

● Ensure that individuals leading education and consent discussions about the return of SGFs are prepared to help patients with varying preferences for decisional autonomy from their close others.

● Patients attribute high trust and expertise to their oncologists; therefore, prepare oncologists to serve as a primary resource who can provide balanced advice to patients about the SGFs decision.

● Create patient educational materials that provide clear information about the potential benefits and harms of SGFs. Distinguish between potential outcomes of SGFs for patients (with a consideration of their cancer stage and prognosis) and for their families.

● Ensure that patients understand that the decision to undergo TGP is separate from the decision about return of SGFs (and that there are varying potential benefits and harms of each choice).

● Structure education and consent discussions about TGP and the return of SGFs to be temporally flexible, and therefore capable of accommodating patients’ preferences to take time to deliberate, seek additional input from close others, and conduct independent research.

● Give patients a choice about the return of actionable SGFs. Either opt-in or opt-out models of germline variant management could allow such patient choice, but each has unique implications for resources to support informed patient decision-making and subsequent uptake of SGFs.

● Require patients to make decisions about the management of actionable and non-actionable SGFs in the event of their death at the time of consenting to TGP and the return of SGFs.