Experiences and Attitudes of Genome Investigators Regarding Return of Individual Genetic Test Results

Purpose Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research. Methods: We surveyed corresponding authors of genome-wide association studies (GWAS), identified through the National Human Genome Research Institute's Catalog of Published GWAS, to describe the experiences and attitudes of these stakeholders. Results: Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index GWAS. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants's health (63%) and respect for participants's; desires for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return. Conclusion: Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances

Behavioural Medicine Group Intervention for High-Utilising Somatising Patients: Evaluation Across 7 Unrelated Healthcare Organisations

Objective: To determine the clinical effectiveness of a standardised behavioural medicine group intervention when implemented by different group leaders in 7 geographically diverse healthcare organisations (HCOs). Design: This study used longitudinal data collected for quality assurance purposes. Patients were asked to complete questionnaires measuring presenting problems (Initial Health Status questionnaire), health and functional status [Short Form-36 Health Survey (SF-36)], and physical [Medical Symptom Check List (MSCL)] and psychological distress [Brief Symptom Inventory (BSI)]. Intervention: The Personal Health Improvement Program(TM) (PHIP) designed to treat somatising high utilisers of general medical services. Participants: Patients enrolled in PHIP courses at 7 different HCOs. Complete data were collected from 1194 patients before the course, 787 immediately after the course and 467 at a 6-month follow-up. 39% of patients who finished the course completed questionnaires at all 3 time-points (times 1, 2 and 3, respectively). Of the 467 patients who provided data at all points, complete information was obtained for 356 patients (the study sample). Main outcome measures and results: Patients' symptoms of anxiety, depression, hostility and somatisation, as well as overall psychological distress improved (pCognitive behavioural therapy, Disease management programmes, Patient education, Pharmacoeconomics, Quality of care, Quality of life, Quality of life rating scales, Somatoform disorders

Movescapes and eco‐evolutionary movement strategies in marine fish: Assessing a connectivity hotspot

Data from the Integrated Tracking of Aquatic Animals in the Gulf of Mexico (iTAG) network, and sister networks, were used to evaluate fish movements in the Florida Keys—an extensive reef fish ecosystem just north of Cuba connecting the Atlantic Ocean and Gulf of Mexico. We analysed ~2 million detections for 23 species, ranging from reef fish such as Nassau grouper (Epinephelus striatus, Serranidae) to migratory apex predators such as white sharks (Carcharodon carcharias, Lamnidae). To facilitate comparisons across species, we used an eco‐evolutionary movement strategy framework that identified measurable movement traits and their proximate and ultimate drivers. Detectability was species‐specific and quantified with a detection potential index. Life stages detected in the study area varied by species and residency varied with life stage. Four annual movement types were identified as follows: high site‐fidelity residents, range residents, seasonal migrants and general migrants. The endangered smalltooth sawfish (Pristis pectinata, Pristidae), a seasonal migrant, exhibited the greatest within‐ecosystem connectivity. Site attachment, stopover and deep‐water migration behaviours differed between individuals, species and annual movement types. All apex predators were migratory. General migrants were significantly larger than fish in the other movement types, a life‐history and movement trait combination that is common but not exclusive, as many small pelagics also migrate. Most teleosts exhibited movements associated with spawning. As concerns grow over habitat and biodiversity loss, multispecies movescapes, such as presented here, are expected to play an increasingly important role in informing ecosystem‐based and non‐extractive fisheries management strategies