Counsellee’s experience of cancer genetic counselling with pedigrees that automatically incorporate genealogical and cancer database information

Abstract

While pedigree drawing software is often utilised in genetic services, the use of genealogical databases in genetic counselling is unusual. This is mainly because of the unavailability of such databases in most countries. Electronically generated pedigrees used for cancer genetic counselling in Iceland create pedigrees that automatically incorporate information from a large, comprehensive genealogy database and nationwide cancer registry. The aim of this descriptive qualitative study was to explore counsellees' experiences of genetic services, including family history taking, using these electronically generated pedigrees. Four online focus groups with 19 participants were formed, using an asynchronous posting method. Participants were encouraged to discuss their responses to questions posted on the website by the researcher. The main themes arising were motivation, information and trust, impact of testing and emotional responses. Most of the participants expressed trust in the method of using electronically generated pedigrees, although some voiced worries about information safety. Many experienced worry and anxiety while waiting for results of genetic testing, but limited survival guilt was noted. Family communication was either unchanged or improved following genetic counselling. The use of electronically generated pedigrees was well received by participants, and they trusted the information obtained via the databases. Age did not seem to influence responses. These results may be indicative of the particular culture in Iceland, where genealogical information is well known and freely shared. Further studies are needed to determine whether use of similar approaches to genealogical information gathering may be acceptable elsewhere.

Genetic counselors, patients', and carers’ views on an Australian clinical genetics service information system

“…GHPs have previously raised concerns that asking consent to use information for relatives might create anxiety or prevent sharing (Dheensa et al, , , 2018Forbes Shepherd et al, 2017). However, similar to our findings, previous studies have found that patients want to know how information could be used, and understanding how information is protected might be important for patient reassurance and trust Diergaarde et al, 2007;Horton & Lucassen, 2019;Stefansdottir et al, 2016).…”

“…for other clinical genetics patient cohorts in the United Kingdom and Iceland, who appreciated the benefits of family genetic information, but had privacy concerns, and wanted to know how information was used Stefansdottir et al, 2016).…”

“…• Australian genetic counselors, patients, and carers identified advantages and privacy concerns associated with a shared family genetic information database • Patients and carers trusted genetics health professionals' stewardship of family genetic information within the database, but highlighted the importance of patients knowing how the information was stored and used NSW and ACT services. However, GHPs' and patients' views on health information technology systems such as the GIS have been largely unexplored (Forbes Shepherd et al, 2017;Parker & Lucassen, 2003Stefansdottir et al, 2016). This study sought to explore the attitudes and experiences of genetic counselors, patients, and carers regarding the storage, use, and access of family genetic information in the GIS, a virtual statewide electronic genetic information database.…”

“…Although patients of clinical genetics services recognize genetic information can be both personal and familial and can provide benefits to themselves and relatives, patients have expressed concerns about family genetic information being revealed to a third party such as an insurer, and how the information would be used by GHPs Stefansdottir et al, 2016;Tiller et al, 2020). The balance of privacy concerns versus the benefits of sharing information has been previously explored in patient literature about electronic exchange of non-genetic health information (Ancker et al, 2012;Patel et al, 2015;Simon et al, 2009).…”

A Pilot Study on Pharmacists’ Knowledge, Attitudes and Practices towards Medication Dysphagia via Asynchronous Online Focus Group Discussion

“…Platforms from published papers [28,[30][31][32][33][34][35] and Google [36][37][38][39][40][41][42][43][44][45][46][47][48][49][50] were identified and evaluated. A set of criteria (Supplementary Table S1) was adapted for evaluating platforms [51].…”