The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.

BackgroundThe researcher role is highly debated in qualitative research. This article concerns the researcher-researched relationship.MethodsA group of health science researchers anchored in various qualitative research traditions gathered in reflective group discussions over a period of two years.ResultsEfforts to establish an anti-authoritarian relationship between researcher and researched, negotiation of who actually “rules” the research agenda, and experiences of shifts in “inferior” and “superior” knowledge positions emerged as central and intertwined themes throughout the discussions. The dual role as both insider and outsider, characteristic of qualitative approaches, seemed to lead to power relations and researcher vulnerability which manifested in tangible ways.ConclusionShifting positions and vulnerability surfaced in various ways in the projects. They nonetheless indicated a number of similar experiences which can shed light on the researcher-researched relationship. These issues could benefit from further discussion in the qualitative health research literature.

This article is concerned with how the development of mixed methods research is influenced by the many aspects of human interplay occurring between researchers representing different disciplines. It examines findings from interviews, field notes, and written documentation from a case study involving a team of health science researchers doing mixed methods research on athletes with knee injuries. The researchers experienced that they did not succeed in integrating quantitative and qualitative data collected from this research. From the collected data, a multiplicity of forms of interplay is identified and discussed. The article suggests that more attention needs to be given to power relations as an important aspect of collaboration between researchers belonging to different epistemic cultures.

Background Genetic testing has become an integrated part of health care for patients with breast or ovarian cancer, and the increasing demand for genetic testing is accompanied by an increasing need for easy access to reliable genetic information for patients. Therefore, we developed a chatbot app (Rosa) that is able to perform humanlike digital conversations about genetic BRCA testing. Objective Before implementing this new information service in daily clinical practice, we wanted to explore 2 aspects of chatbot use: the perceived utility and trust in chatbot technology among healthy patients at risk of hereditary cancer and how interaction with a chatbot regarding sensitive information about hereditary cancer influences patients. Methods Overall, 175 healthy individuals at risk of hereditary breast and ovarian cancer were invited to test the chatbot, Rosa, before and after genetic counseling. To secure a varied sample, participants were recruited from all cancer genetic clinics in Norway, and the selection was based on age, gender, and risk of having a BRCA pathogenic variant. Among the 34.9% (61/175) of participants who consented for individual interview, a selected subgroup (16/61, 26%) shared their experience through in-depth interviews via video. The semistructured interviews covered the following topics: usability, perceived usefulness, trust in the information received via the chatbot, how Rosa influenced the user, and thoughts about future use of digital tools in health care. The transcripts were analyzed using the stepwise-deductive inductive approach. Results The overall finding was that the chatbot was very welcomed by the participants. They appreciated the 24/7 availability wherever they were and the possibility to use it to prepare for genetic counseling and to repeat and ask questions about what had been said afterward. As Rosa was created by health care professionals, they also valued the information they received as being medically correct. Rosa was referred to as being better than Google because it provided specific and reliable answers to their questions. The findings were summed up in 3 concepts: “Anytime, anywhere”; “In addition, not instead”; and “Trustworthy and true.” All participants (16/16) denied increased worry after reading about genetic testing and hereditary breast and ovarian cancer in Rosa. Conclusions Our results indicate that a genetic information chatbot has the potential to contribute to easy access to uniform information for patients at risk of hereditary breast and ovarian cancer, regardless of geographical location. The 24/7 availability of quality-assured information, tailored to the specific situation, had a reassuring effect on our participants. It was consistent across concepts that Rosa was a tool for preparation and repetition; however, none of the participants (0/16) supported that Rosa could replace genetic counseling if hereditary cancer was confirmed. This indicates that a chatbot can be a well-suited digital companion to genetic counseling.

BACKGROUND Genetic testing has become an integrated part of the health care for patients with breast or ovarian cancer, and the increasing demand of genetic testing is accompanied by an increasing need of easy access to reliable genetic information for patients. We therefore developed an app (named Rosa), a virtual assistant able to perform human-like digital conversations about genetic BRCA-testing, using chatbot technology. OBJECTIVE Before implementing this new information service in daily clinical practice, we wanted to explore two aspects of chatbot use: 1) The perceived utility and trust in chatbot technology among healthy patients at risk of hereditary cancer, and 2) How interaction with a chatbot regarding sensitive information about hereditary cancer, influences the patients. METHODS A total of 175 healthy individuals at risk of hereditary breast and ovarian cancer, were invited to test the chatbot Rosa before and after genetic counseling. Among 61 participants that consented for individual interview, a selected subgroup of 16 subjects shared their experience through in-depth interviews over video. To secure a varied sample, the participants were recruited from all cancer genetic clinics in Norway and the selection was based on age, gender, and risk of having a BRCA pathogenic variant. RESULTS The overall finding was that the chatbot was very welcomed by the participants. They appreciated the 24/7 availability, and that they could have access wherever they were. The fact that Rosa was created by health care professionals made them feel safe that they received medically correct information. It was referred to as an alternative to Google, only better, since it provided specific and reliable answers to their questions. All participants denied increased worry after reading about genetic testing and hereditary breast and ovarian cancer in Rosa. CONCLUSIONS This study shows that chatbot use in clinical genetic practice contributes to uniform information for our patients, regardless of residence and access to specialized healthcare personnel, without adding discomfort or worry. The availability of quality assured information, tailored to the specific situation the patient is facing, has had a reassuring effect on the participants. This indicates that a chatbot can be a well-suited companion to genetic counseling, however we found no evidence supporting that Rosa could replace genetic counseling.