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.

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The purpose of this study was to assess primary care physicians' awareness, experience, opinions and preparedness to answer patients' questions regarding direct-to-consumer (DTC) genetic testing. An anonymous survey was mailed to 2,402 family and internal medicine providers in North Carolina. Of the 382 respondents, 38.7% (n = 148) were aware of and 15% (n = 59) felt prepared to answer questions about DTC genetic tests. Respondents aged 50 or older were more likely to be aware of DTC genetic testing than those less than 40 years old (OR = 2.42). Male providers were more likely to feel prepared to answer questions than female providers (OR = 2.65). Among respondents who reportedly were aware, family practitioners were more likely than internists (OR = 3.30) to think DTC testing was clinically useful, and 18.9% had patients ask questions or bring in test results. The small percent of physicians who were aware of DTC genetic testing or felt prepared to answer questions about it suggests that education of providers will be necessary if testing becomes more widespread.

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Background: Focus groups were conducted in a mid-sized community to explore community members’ awareness and perceptions of genomic medicine and identify effective methods to educate the public about this topic. Methods: Thirteen focus groups were conducted with a demographically representative pool of 121 participants using a semi-structured interview guide. Transcripts were analyzed through a computer assisted approach with Atlas TI consisting of coding, categorizing, comparing, and contrasting relevant data. Results: Identified categories were organized into 6 main themes, which were similar across the groups and included: a lack of awareness, perceived benefits, concerns about genomic medicine, reasons for poor health related behavior, the potential impact of genetic information on health behavior, and the best ways to educate the community. Common concerns included lack of affordability, unanticipated physical harm, mistrust of the government and researchers, downstream effects like overpopulation, playing God/disturbing the natural order, lack of regulations, loss of privacy, genetic discrimination, and moral dilemmas posed by genetic engineering, cloning, choosing traits, and abortions resulting from genetic information. Participants also discussed ways to educate the community. Conclusions: While individuals recognized that diseases run in families, personal experience was a driving factor in participants’ level of knowledge. Many expressed optimism about genomic medicine. However, the lack of depth in responses and their misconceptions reflect a deficiency of knowledge, which along with their personal, moral, and global concerns could impede acceptance and utilization of genomic medicine. Many community members are receptive to learning more about genomic medicine, and many of their concerns and misconceptions can be addressed through a well designed education strategy.