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Public Health Genomics

Christos Nikolaidis, Chang Ming, Carla Pedrazzani, Tina van der Horst, Andrea Kaiser-Grolimund, Zanfina Ademi, Rosmarie Bührer-Landolt, Nicole Bürki, Maria Caiata-Zufferey, Victoria Champion, Pierre O Chappuis, Carmen Kohler, Tobias E Erlanger, Rossella Graffeo, Heather Hampel, Karl Heinimann, Viola Heinzelmann-Schwarz, Christian Kurzeder, Christian Monnerat, Laurel L Northouse, Olivia Pagani, Nicole Probst-Hensch, Manuela Rabaglio, Eveline Schoenau, Eric J G Sijbrands, Monika Taborelli, Corinne Urech, Valeria Viassolo, Simon Wieser, Maria C Katapodi
BACKGROUND: An international workshop on cancer predisposition cascade genetic screening for hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) took place in Switzerland, with leading researchers and clinicians in cascade screening and hereditary cancer from different disciplines. The purpose of the workshop was to enhance the implementation of cascade genetic screening in Switzerland. Participants discussed the challenges and opportunities associated with cascade screening for HBOC and LS in Switzerland (CASCADE study); family implications and the need for family-based interventions; the need to evaluate the cost-effectiveness of cascade genetic screening; and interprofessional collaboration needed to lead this initiative...
January 29, 2019: Public Health Genomics
Kay Schreuder, Anne Kuijer, Sanne Bentum, Thijs van Dalen, Sabine Siesling
BACKGROUND: The nationwide use of the 21-gene recurrence score (21-RS) and implications regarding chemotherapy administration in relation to clinical risk in early breast cancer patients are investigated. METHODS: Breast cancer patients surgically treated between 2014 and 2016 were selected from the Netherlands Cancer Registry and categorized as having a clinical low, intermediate, or high risk of developing metastases. Deployment of the 21-RS is advocated in patients with an intermediate risk of developing metastases...
January 16, 2019: Public Health Genomics
Sarah N Thomas, Shelly R Hovick, Naomi Tan, Amy C Sturm, Kevin Sweet
BACKGROUND: Family health history tools have the ability to improve health outcomes and promote patient-provider communication, but some research suggests their effectiveness is limited. Tool design features may heavily influence users' perceptions of the tools. AIMS: This study provides a summative evaluation of the Family HealthLink tool, which assesses cancer and coronary heart disease risk based on personal and family health history, to better understand how tool design and message content impact user perceptions...
December 12, 2018: Public Health Genomics
Gabriel Q Shaibi, Iftikhar J Kullo, Davinder P Singh, Richard R Sharp, Eleanna De Filippis, Idali Cuellar, Valentina Hernandez, Sharon Levey, Carmen Radecki Breitkopf, Janet E Olson, James R Cerhan, Lawrence J Mandarino, Stephen N Thibodeau, Noralane M Lindor
AIM: To develop a process for returning medically actionable genomic variants to Latino patients receiving care in a Federally Qualified Health Center. METHODS: Prior to recruitment, researchers met with primary care providers to (1) orient clinicians to the project, (2) establish a process for returning actionable and nonactionable results to participants and providers through the electronic health record, and (3) develop a process for offering clinical decision support for follow-up education and care...
December 6, 2018: Public Health Genomics
Caitlin G Allen, Brittany Andersen, Muin J Khoury, Megan C Roberts
BACKGROUND: The growing availability of genomic information to the public may spur discussion about genetics and genomics on social media. Sites, including Twitter, provide a unique space for the public to access and discuss health information. The objective of this study was to better understand how social media users are sharing information about genetics and genomics in health and healthcare and what information is most commonly discussed among Twitter users. METHODS: We obtained tweets with specific genetics- and genomics-related keywords from Crimson Hexagon...
November 22, 2018: Public Health Genomics
Melanie Walker Hardy, Hillary J Kener, Karen Arnovitz Grinzaid
BACKGROUND/AIMS: Access to preconception carrier screening, which provides at-risk couples with more reproductive options, is critically important. To address this need in the Jewish community, genetic counselors at Emory University launched JScreen (, a national online genetic disease education and carrier screening program. To reach the preconception demographic, JScreen initiated a study evaluating the impact of marketing and education on knowledge and screening activity on college campuses...
November 8, 2018: Public Health Genomics
Kelly F J Stewart, Daša Kokole, Anke Wesselius, Annemie M W J Schols, Maurice P Zeegers, Hein de Vries, Liesbeth A D M van Osch
BACKGROUND: With interest in personalised health care growing, so is interest in personal genetic testing. This is now offered direct-to-consumer, thereby referred to as direct-to-consumer genetic testing (DTC-GT). Criticisms have been expressed on whether a truly informed decision to undergo testing is made with regard to these services. In order to provide relevant information to achieve this, knowing the characteristics of the expected user population is helpful. Therefore, the aim of this study is to identify characteristics of individuals who (1) find the concept of DTC-GT acceptable and (2) consider undergoing DTC-GT in the distant or near future...
October 25, 2018: Public Health Genomics
Karen L Edwards, Deborah Goodman, Catherine O Johnson, Lari Wenzel, Celeste Condit, Deborah Bowen
OBJECTIVES: Genomic information will increasingly be used to aid in the prevention, diagnosis, and treatment of disease. Several national initiatives are paving the way for this new reality, while also promoting new models of participant-engaged research. We compare the opinions of research participants in a cancer registry, human genetic researchers, and institutional review board (IRB) professionals about the return of individual-level genetic results (ROR). METHODS: Online surveys were administered to participants in a cancer registry (n = 450) and overlapping questions were compared to our previous online national surveys of human genetic researchers (n = 351) and IRB professionals (n = 208)...
September 18, 2018: Public Health Genomics
Emmanuelle Lévesque, Emily Kirby, Ineke Bolt, Bartha Maria Knoppers, Inez de Beaufort, Nora Pashayan, Martin Widschwendter
BACKGROUND AND OBJECTIVE: Advances in omics open new opportunities for cancer risk prediction and risk-based screening interventions. However, implementation of risk prediction in clinical practice may impact the ethical, legal, and regulatory aspects of current cancer screening programs. In order to support decision-making, we analyzed the ethical, legal, and regulatory issues and developed a set of Points to Consider to support management of these issues. METHODS: We analyzed the legal and policy frameworks applicable to breast and cervical cancer screening programs in 7 European countries...
September 17, 2018: Public Health Genomics
Susanne Rebers, Eric Vermeulen, Alexander P Brandenburg, Neil K Aaronson, Marjanka K Schmidt
BACKGROUND: Residual tissue samples, i.e., samples excised for diagnosis or during treatment, are commonly used for medical research. In the Netherlands, they can be used provided the patient did not opt out of this use. Previous research has shown that recall of the informed consent procedure for tissue use is poor. Here, we investigate recall of three consent procedures: informed consent, opt-out, and opt-out plus (an opt-out procedure with an information procedure similar to that of informed consent)...
September 10, 2018: Public Health Genomics
Denis Horgan, Henk J van Kranen, Servaas A Morré
The expansion of European small and medium-sized enterprises (SMEs) into the healthcare innovation arena suggests that this should be an important EU policy priority that can significantly benefit the economy, society and citizens, including patients. Deepening and widening of Europe's SMEs' growth and activities is part of the EU objectives as set out by the European Commission in its Communications "Small Business Act" for Europe [<xref ref-type="bibr" rid="ref1">1</xref>] and "Small Business, Big World" [<xref ref-type="bibr" rid="ref2">2</xref>]...
August 24, 2018: Public Health Genomics
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No abstract text is available yet for this article.
2018: Public Health Genomics
(no author information available yet)
No abstract text is available yet for this article.
2018: Public Health Genomics
Elizabeth G Moore, Myra Roche, Christine Rini, Edward W Corty, Zahra Girnary, Julianne M O'Daniel, Feng-Chang Lin, Giselle Corbie-Smith, James P Evans, Gail E Henderson, Jonathan S Berg
BACKGROUND/AIMS: Recent genomic medicine initiatives underscore the importance of including diverse participants in research. Considerable literature has identified barriers to and facilitators of increasing diversity, yet disparities in recruiting and retaining adequate numbers of participants from diverse groups continue to limit the generalizability of clinical genomic research. METHODS: The North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing study employed evidence-based strategies to enhance the participation of under-represented minority patients...
2017: Public Health Genomics
Ilse van Roessel, Matthias Reumann, Angela Brand
INTRODUCTION: Currently, abundances of highly relevant health data are locked up in data silos due to decentralized storage and data protection laws. The health data cooperative (HDC) model is established to make this valuable data available for societal purposes. The aim of this study is to analyse the HDC model and its potentials and challenges. RESULTS: An HDC is a health data bank. The HDC model has as core principles a cooperative approach, citizen-centredness, not-for-profit structure, data enquiry procedure, worldwide accessibility, cloud computing data storage, open source, and transparency about governance policy...
2017: Public Health Genomics
Melinda Krakow, Chelsea L Ratcliff, Bradford W Hesse, Alexandra J Greenberg-Worisek
BACKGROUND/AIMS: Public understanding of the role of genetics in disease risk is key to appropriate disease prevention and detection. This study assessed the current extent of awareness and use of genetic testing in the US population. Additionally, the study identified characteristics of subgroups more likely to be at risk for low genetic literacy. METHODS: The study used data from the National Cancer Institute's 2017 Health Information National Trends Survey, including measures of genetic testing awareness, genetic testing applications and genetic testing usage...
2017: Public Health Genomics
Bettina Borisch, Chukwuemeka A Iloegbu, Nadya Wells
No abstract text is available yet for this article.
2017: Public Health Genomics
(no author information available yet)
No abstract text is available yet for this article.
2017: Public Health Genomics
(no author information available yet)
No abstract text is available yet for this article.
2017: Public Health Genomics
Laura Mählmann, Matthias Reumann, Nikolaos Evangelatos, Angela Brand
Digitization is considered to radically transform healthcare. As such, with seemingly unlimited opportunities to collect data, it will play an important role in the public health policy-making process. In this context, health data cooperatives (HDC) are a key component and core element for public health policy-making and for exploiting the potential of all the existing and rapidly emerging data sources. Being able to leverage all the data requires overcoming the computational, algorithmic, and technological challenges that characterize today's highly heterogeneous data landscape, as well as a host of diverse regulatory, normative, governance, and policy constraints...
2017: Public Health Genomics
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