Introduction: There is growing evidence to suggest that the integration of genomics into the palliative oncology setting is not only critical for the identification of individuals who may be at increased familial risk; but that it is also a key component of providing family centered care - a concept at the heart of both genetic counseling and palliative care alike. Barriers to this integration have been well described, and some strides have been made in describing the current genetic practices and policies within palliative oncology. However, most of this research has been in the form of broad literature reviews performed outside of the United States. Methods: To better describe regional genetics-palliative practices, an online, qualitative survey was distributed to both cancer genetic counselors and palliative oncology providers at four of the US Mayo Clinic locations. The survey was used to illuminate the current processes, policies, and relationships between the groups; as well as to identify potential improvements. Results: Responses were received from 15 MD/DOs, 9 PAs, 16 NPs, 27 RNs, 4 GCs, and 8 “Others,” of which 54.4% worked primarily in hematology & oncology, 35.4% in palliative care, and 6.3% in genetic counseling. 89% of palliative care providers and 62% of oncology providers reported never or only once yearly referring patients for genetic counseling; citing that they were (1) unaware of genetic counseling resources or referral processes, (2) uncertain on how genetic testing would influence patients’ medical management, and (3) felt it was out of their scope of practice. Similarly, each genetic counselor that responded reported never or once yearly receiving referrals from palliative care. Conclusion: While additional, larger studies are required to most accurately represent the practices of genetic counselors and palliative oncology providers at the Mayo Clinic, this study suggests that providers across all specialties surveyed would find additional resources for referring patients to both palliative care and genetic counseling to be useful. Thus, future efforts could be directed towards educating palliative oncology providers on the role of genetic counselors, as well as educating genetic counselors on the role of palliative care.

Every year, hundreds of babies in Arizona are found to have a serious condition identified through newborn screening (NBS), and with current law requiring Arizona to include new conditions to be added to the recommended uniform screening panel (RUSP) within two years of addition to the RUSP, the number of identified babies can be expected to increase. It is essential that physicians are prepared to handle the results of NBS and discuss the implications, in a timely manner, with their patients in order to facilitate treatment. Purpose: To (1) evaluate the current practices and processes of communicating newborn screening results to parents; (2) assess the effectiveness and timeliness of the communication methods used for conveying NBS results; (3) identify potential barriers and challenges associated with the communication of NBS results. Methods: Approval for this study was obtained from the Arizona State University Institutional Review Board. A survey was generated through Qualtrics and Arizona physicians were contacted via email (n = 462). The email contained a link to the survey, or a scannable QR code was provided if the survey was to be accessed via handheld device. Results: Seventy physicians responded (15% response rate). More than half of the participants often discuss NBS with families prior to conducting the initial screen. 40% of physicians do not feel confident in explaining the purpose and significance of the two newborn screens required by Arizona law. 54% of respondents are not satisfied with the training and resources provided to support them in counseling patients on newborn screening results. 51% of respondents involve a geneticist, other specialist(s), or other experts in the management of an abnormal result. Of the roughly half that do not involve a geneticist or other specialist when an abnormal result requires follow-up, 50% of those physicians order further genetic testing in office. Conclusions: Most physicians agree that their greatest barrier to delivering abnormal screening results is using patient friendly language and would prefer language friendly ACT sheets to improve their communication of abnormal screening results. Incorporating personnel skilled in communicating uncertain news, such as a genetic counselor (GC), into Arizona's NBS program could enhance physician communication skills and improve patient satisfaction, while also providing psychosocial support and facilitating follow-up care for patients.

Telehealth is the use of information and communications technology by healthcare professionals to provide care to patients. When this technology is being used specifically for genetic services, it is called telegenetics. Previous studies that examine the small-scale use of telegenetics for the field of genetic counseling have shown that the technology may provide a way to address the problem of patient access to genetic counseling services, assuming its efficacy. Patients are satisfied with telegenetics, but genetic counselors hold more reservations. Because of this and the many regulatory barriers in its way, telegenetics was only slowly being adopted when the coronavirus was declared a pandemic in March 2020. The pandemic forced a switch to telegenetics at a scale never seen before. This study begins with a literature review to assess the situation of telegenetics before and during the pandemic. It then surveys practicing genetic counselors in Arizona in order to reveal what they think about telegenetics when it is the encouraged, and sometimes only, modality. Since the literature review revealed that genetic counselors, not patients, are the ones with concerns, it is important to hear their points of view. This study reveals that genetic counselors want telegenetics as an option but not as a replacement for in-person appointments. All respondents agreed that increased patient access is the main benefit of telegenetics. There are reported challenges that must be overcome, but genetic counselors in Arizona overwhelming believe that telegenetics use will be continued in the future.