TABLE 6.

A summary of challenges associated with returning negative results and suggested solutions

Challenges with returning negative results	Potential solutions
Logistical/organizational challenges
Mailing letters was labor intensive to study staff	Allocation of sufficient budget and resources should be given for the return of negative results. Increase return of results by electronic health record/patient portal
Minimal use of genetic counseling services, but many questions about negative results	Development and dissemination of accessible, patient-friendly ancillary educational materials, such as interactive websites, videos, or FAQs documents
Many participants claimed they did not receive mailed results	Limit time from consent to return of results to minimize changes of address. Increase return of results by electronic health record/patient portal
Participants were lost to follow-up	Limit time from consent to return of results to minimize changes of addresses. Maintain regular contact with participants and use contact as an opportunity to collect updated participant contact information
Language and participant comprehension challenges
Diverse terminology used to describe “negative results”	Further research is needed to examine what terminology patients prefer for negative results and how patients prefer negative results to be described. Attempts to consistently use such terminology when returning negative results to patients should be made
Challenge of clarifying scope and limitations of negative results to patients	Improve explanations about the meaning and limitations of negative results when returning negative results to patients, especially when results are returned by mail. Possible mechanisms to improve explanations and limitations of results include ancillary education materials such as interactive websites, videos, or FAQs documents
Lack of clarity on what negative results mean for biological family members	Improved explanations about what negative results mean for biological family members are needed when returning negative results to patients
Participant confusion about how negative results affect their risk of conditions/diseases evaluated by genomic screen	Clear explanations about how negative results affect patients’ risk of conditions/ disease evaluated are needed when returning negative results to patients
Participant questions about the meaning of negative results when there is a known family history of disease	Improve explanations about what negative results mean for the participant when there is a known family history of disease. Possible mechanisms to improve explanations include ancillary education materials such as interactive websites, videos, or FAQs documents