Rebecca A. Marmor

Genome Privacy: Challenges, Technical Approaches to Mitigate Risk, and Ethical Considerations in the United States

Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches. In addition, several types of studies require privacy‐preserving linkage of genotype and phenotype information across different locations (e.g., genotypes stored in a sequencing facility and phenotypes stored in an electronic health record) to accelerate discoveries. The computer science community has developed a spectrum of techniques for data privacy and confidentiality protection, many of which have yet to be tested on real‐world problems. In this article, we discuss clinical, technical, and ethical aspects of genome data privacy and confidentiality in the United States, as well as potential solutions for privacy‐preserving genotype–phenotype linkage in biomedical research.

Lessons Learned for Online Health Community Moderator Roles: A Mixed-Methods Study of Moderators Resigning From WebMD Communities

Background Online health community (OHC) moderators help facilitate conversations and provide information to members. However, the necessity of the moderator in helping members achieve goals by providing the support they need remains unclear, with some prior research suggesting that moderation is unnecessary or even harmful for close-knit OHCs. Similarly, members’ perceptions of moderator roles are underexplored. Starting January of 2013, WebMD moderators stopped working for WebMD communities. This event provided an opportunity for us to study the perceived role of moderators in OHCs. Objective We examine the OHC members’ perception on OHC moderators by studying their reactions toward the departure of moderators in their communities. We also analyzed the relative posting activity on OHCs before and after the departure of moderators from the communities among all members and those who discussed moderators’ departures. Methods We applied a mixed-methods approach to study the posts of all 55 moderated WebMD communities by querying the terms relating to discussions surrounding moderators’ disappearance from the WebMD community. We performed open and axial coding and affinity diagramming to thematically analyze patients’ reactions to the disappeared moderators. The number of posts and poster groups (members and moderators) were analyzed over time to understand posting patterns around moderators’ departure. Results Of 821 posts retrieved under 95 threads, a total of 166 open codes were generated. The codes were then grouped into 2 main themes with 6 total subthemes. First, patients attempted to understand why moderators had left and what could be done to fill the void left by the missing moderators. During these discussions, the posts revealed that patients believed that moderators played critical roles in the communities by making the communities vibrant and healthy, finding solutions, and giving medical information. Some patients felt personally attached with moderators, expressing they would cease their community participation. On the other hand, patients also indicated that moderators were not useful or sometimes even harmful for peer interactions. The overall communities’ posting activity, which was already in decline, showed no significant difference before and after the moderators’ departure. In fact, the overall posting activities of the communities were declining well before the moderators’ departure. These declining posting activities might be the reason why WebMD removed the moderators. Conclusion Compassionate moderators who provide medical expertise, control destructive member posts, and help answer questions can provide important support for patient engagement in OHCs. Moderators are in general received positively by community members and do not appear to interfere with peer interactions. Members are well aware of the possibility of misinformation spreading in OHCs. Further investigation into the attitudes of less vocal community members should be conducted.

Integrated precision medicine: the role of electronic health records in delivering personalized treatment

Precision Medicine involves the delivery of a targeted, personalized treatment for a given patient. By harnessing the power of electronic health records (EHRs), we are increasingly able to practice precision medicine to improve patient outcomes. In this article, we introduce the scientific community at large to important building blocks for personalized treatment, such as terminology standards that are the foundation of the EHR and allow for exchange of health information across systems. We briefly review different types of clinical decision support (CDS) and present the current state of CDS, which is already improving the care patients receive with genetic profile‐based tailored recommendations regarding diagnostic and treatment plans. We also report on limitations of current systems, which are slowly beginning to integrate new genomic data into patient records but still present many challenges. Finally, we discuss future directions and how the EHR can evolve to increase the capacity of the healthcare system in delivering Precision Medicine at the point of care. WIREs Syst Biol Med 2017, 9:e1378. doi: 10.1002/wsbm.1378

The Use of Solicited Publishing by Academic Surgeons

Background: Few details are known about open‐access surgery journals that solicit manuscripts via E‐mail. The objectives of this cross‐sectional study are to compare solicitant surgery journals with established journals and to characterize the academic credentials and reasons for publication of their authorship. Methods: We identified publishers who contacted the senior author and compared their surgery journals with 10 top‐tier surgical journals and open‐access medical journals. We assessed the senior authorship of articles published January 2017–March 2017 and utilized a blinded survey to determine motivations for publication. Results: Throughout a 6‐week period, 110 E‐mails were received from 29 publishers distributing 113 surgery journals. Compared with established journals, these journals offered lesser publication fees, but also had lesser PubMed indexing rates and impact factors (all P < .002). Professors, division chiefs, and department chairs were the senior authors of nearly half of US‐published papers and spent ≈

Laparoscopy is Safe and Accurate to Evaluate Peritoneal Surface Metastasis Prior to Cytoreductive Surgery

83,000 to publish 117 articles in journals with a median impact factor of 0.12 and a 33% PubMed indexing rate. Survey responses revealed a dichotomy as 43% and 57% of authors published in these journals with and without knowledge of their solicitant nature, respectively. The most commonly reported reasons for submission included waived publication fees (50%), invitation (38%), and difficulty publishing elsewhere (12%). Conclusion: Despite their sparse PubMed indexing and low impact factors, many senior academic faculty publish in solicitant surgery journals. This study highlights the importance for the academic surgical community to be cognizant of the quality of a journal when reviewing the literature for research and evidence‐based practice.