A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.

Aim: Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Materials & methods: Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Results: Few respondents had heard of 'precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. Conclusion: This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.

From Genetics to Genomics: Facing the Liability Implications in Clinical Care.

Health care is transitioning from genetics to genomics, in which single-gene testing for diagnosis is being replaced by multi-gene panels, genome-wide sequencing, and other multi-genic tests for disease diagnosis, prediction, prognosis, and treatment. This health care transition is spurring a new set of increased or novel liability risks for health care providers and test laboratories. This article describes this transition in both medical care and liability, and addresses 11 areas of potential increased or novel liability risk, offering recommendations to both health care and legal actors to address and manage those liability risks.

What do genetic counselors learn on the job? A qualitative assessment of professional development outcomes.

Professional development is an important goal for professionals in human service fields such as counseling, teaching, and nursing. However, there are relatively few published papers on this topic specific to genetic counselors, and no studies systematically examine the outcomes of their professional development. This study was designed to investigate genetic counselors' perceptions of their post-degree learning and to compare themes in their learning to those of psychotherapist professional development models. Two hundred ninety-three genetic counselors completed the demographics portion of an anonymous online survey, and of these, 185 also responded to at least one of two open-ended items: What is the most important thing you have learned about yourself in your practice as a genetic counselor? and What advice would you give to genetic counseling students just starting their career? An interpretative content-analysis method was used to extract three major themes: Intrapersonal lessons, Interpersonal lessons, and Professional lessons. Training and practice implications and research recommendations are provided.

The psychic costs of empathic engagement: personal and demographic predictors of genetic counselor compassion fatigue.

Empathic connection with one's patients is essential to genetic counselor clinical practice. However, repeatedly engaging with distressed patients may cause compassion fatigue, a phenomenon characterized as feeling overwhelmed by experiencing patients' suffering. In order to extend findings of an initial qualitative study, we surveyed 222 genetic counselors about their compassion fatigue and factors that predict its occurrence. Multiple regression analysis identified seven significant predictors accounting for 53.7% of the variance in compassion fatigue. Respondents at higher risk of compassion fatigue were more likely to report being burned out, using self-criticism and giving up to manage stress, experiencing a greater variety of distressing clinical events, having larger patient caseloads, relying on religion as a coping strategy, having no children, and seeking support to manage stress. Respondents also provided critical incidents regarding their compassion fatigue and themes in these incidents are described. Practice and research recommendations are provided.

An investigation of genetic counselors' discussion of genetic discrimination with cancer risk patients.

Twenty-five genetic counselors who see familial cancer risk patients were interviewed about their definitions of genetic discrimination, perceptions of patient risk for discrimination, frequency and type of discrimination experienced by their patients, sources of information about discrimination, and what they tell patients about genetic discrimination. There was variability in participant definitions and content of discussions of genetic discrimination. Although 82% regarded risk to be low to theoretical, 40% reported possible instances of genetic discrimination, including insurance companies requiring results to cover procedures, denial of life/health insurance, social discrimination, and employment discrimination. Ninety-six percent of the sample reported always or almost always discussing genetic discrimination, and one or more of the following: insurance discrimination risks, protective legislation, no known cases positively documenting discrimination, strategies to avoid discrimination, and uncertainty of protective measures. The majority use current literature and research as information sources. Practice, policy, and research implications are discussed.

A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice.

There is limited research about ethical and professional dilemmas that genetic counselors encounter in their practice and their strategies for addressing them. In this study, 454 genetic counselors rated the frequency with which they encounter each of 16 ethical/professional challenges identified and categorized previously (McCarthy Veach P., Bartels DM, LeRoy BS (2001) J Genet Couns 10(2):97-119). Over 40% indicated these issues occurred frequently: patient emotions, diversity, financial constraints, uncertainty, and colleague error. Two hundred and fifty-five respondents provided personal anecdotes describing exceptionally challenging situations and recommended strategies for addressing them. Most of their anecdotes involved informed consent, value conflicts, confidentiality, colleague error, withholding information, and resource allocation. The most frequently recommended strategies were further discussion with patients, consultation with other professionals, and referral to other health sources. Thirty-five respondents were unable to/did not offer strategies. Respondent demographics were not related to frequency of issues, type of anecdote, or recommended strategies. Practice, policy, and research implications are discussed.