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Unsolicited finding

Sarah Cuschieri
Academics have a duty towards peers and scholars alike to engage in research work and to publish their findings. This also assists in establishing personal academic success as well as the attainment of research grants. In the past, authors used to publish their research articles for free but access to these articles was restricted to subscription users only. Recently, open access publishing has gained momentum, whereby such articles are made freely accessible online. However open access publishing comes with a price tag for the author through article processing charges...
February 27, 2018: Early Human Development
R M Bijlsma, R H P Wouters, H Wessels, A M May, M G E M Ausems, E E Voest, A L Bredenoord
OBJECTIVE: Next-generation sequencing (NGS) is increasingly being employed in the context of personalized cancer treatment. Anticipating unsolicited findings that may arise during a NGS procedure is a key consideration; however, little is known about cancer patients' intentions, needs, and preferences concerning the return of unsolicited findings. METHODS: A qualitative design using individual semi-structured interviews with 24 cancer patients was utilized to explore patients' decisions on whether to receive unsolicited findings from NGS...
February 22, 2018: Psycho-oncology
Nikki R Adler, Patrick D Mahar, John W Kelly
BACKGROUND: Legal and ethical obligations do not always align when doctors become aware of a clinical situation involving a person with whom they have no pre existing therapeutic relationship. Noting a potentially malignant skin lesion, such as a melanoma on a person outside the clinical setting, provides a pertinent example. OBJECTIVE: The aim of this article is to describe the legal, ethical and professional considerations surrounding proffering a dermatological opinion in the case of suspected melanoma outside the clinical setting...
December 2017: Australian Family Physician
Prashanth Sunkureddi, Dawn Gibson, Stephen Doogan, John Heid, Samir Benosman, Yujin Park
INTRODUCTION: Online communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS). METHODS: Unguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e...
February 15, 2018: Advances in Therapy
Kurt D Christensen, Barbara A Bernhardt, Gail P Jarvik, Lucia A Hindorff, Jeffrey Ou, Sawona Biswas, Bradford C Powell, Robert W Grundmeier, Kalotina Machini, Dean J Karavite, Jeffrey W Pennington, Ian D Krantz, Jonathan S Berg, Katrina A B Goddard
PurposeSecondary findings from genomic sequencing are becoming more common. We compared how health-care providers with and without specialized genetics training anticipated responding to different types of secondary findings.MethodsProviders with genomic sequencing experience reviewed five secondary-findings reports and reported attitudes and potential clinical follow-up. Analyses compared genetic specialists and physicians without specialized genetics training, and examined how responses varied by secondary finding...
February 1, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
Gemma R Brett, Ella J Wilkins, Emma T Creed, Kirsty West, Anna Jarmolowicz, Giulia M Valente, Yael Prawer, Elly Lynch, Ivan Macciocca
As genomic sequencing becomes more widely available in clinical settings for diagnostic purposes, a number of genetic counseling issues are gaining precedence. The ability to manage these issues will be paramount as genetic and non-genetic healthcare professionals navigate the complexities of using genomic technologies to facilitate diagnosis and inform patient management. Counseling issues arising when counseling for diagnostic genomic sequencing were identified by four genetic counselors with 10 years of collective experience providing genetic counseling in this setting...
January 24, 2018: Journal of Genetic Counseling
Krysia Canvin, Catherine A MacLeod, Gill Windle, Amanda Sacker
Background: legislation places an onus on local authorities to be aware of care needs in their locality and to prevent and reduce care and support needs. The existing literature overlooks ostensibly 'healthy' and/or non-users of specific services, non-health services and informal assistance and therefore inadequately explains what happens before or instead of individuals seeking services. We sought to address these gaps by exploring older adults' accounts of seeking assistance in later life...
January 5, 2018: Age and Ageing
Cherie A Fathy, James W Pichert, Henry Domenico, Sahar Kohanim, Paul Sternberg, William O Cooper
Importance: Understanding the distribution of patient complaints by physician age may provide insight into common patient concerns characteristic of early, middle, and late stages of careers in ophthalmology. Most previous studies of patient dissatisfaction have not addressed the association with physician age or controlled for other characteristics (eg, practice setting, subspecialty) that may contribute to the likelihood of patient complaints, unsafe care, and lawsuits. Objective: To assess the association between ophthalmologist age and the likelihood of generating unsolicited patient complaints (UPCs) among a cohort of ophthalmologists...
January 1, 2018: JAMA Ophthalmology
D F Vears, K Sénécal, A J Clarke, L Jackson, A M Laberge, L Lovrecic, A Piton, K L I Van Gassen, H G Yntema, B M Knoppers, P Borry
Although NGS technologies are well-embedded in the clinical setting for identification of genetic causes of disease, guidelines issued by professional bodies are inconsistent regarding some aspects of reporting results. Most recommendations do not give detailed guidance about whether variants of uncertain significance (VUS) should be reported by laboratory personnel to clinicians, and give conflicting messages regarding whether unsolicited findings (UF) should be reported. There are also differences both in their recommendations regarding whether actively searching for secondary findings (SF) is appropriate, and in the extent to which they address the duty (or lack thereof) to reanalyse variants when new information arises...
January 2018: European Journal of Human Genetics: EJHG
D L van der Velden, C M L van Herpen, H W M van Laarhoven, E F Smit, H J M Groen, S M Willems, P M Nederlof, M H G Langenberg, E Cuppen, S Sleijfer, N Steeghs, E E Voest
Background: due to rapid technical advances, steeply declining sequencing costs, and the ever-increasing number of targeted therapies, it can be expected that extensive tumor sequencing such as Whole Exome- and -Genome Sequencing will soon be applied in standard care. Clinicians will thus be confronted with increasingly complex genetic information and multiple test-platforms to choose from. General medical training, meanwhile, can hardly keep up with the pace of innovation. Consequently, there is a rapidly growing gap between clinical knowledge and genetic potential in cancer care...
September 27, 2017: Annals of Oncology: Official Journal of the European Society for Medical Oncology
Mitesh J Borad, Patricia M LoRusso
The advent of next-generation sequencing has accelerated the implementation of genomic profiling in the care and management of patients with cancer. Initial efforts have focused on target identification in patients with advanced cancer. Prognostication, resistance detection, disease monitoring, and early detection efforts are also underway. This review highlights some of the challenges in this evolving space. This includes choosing between gene-panel and comprehensive approaches, DNA and transcriptome data integration, reduction of false-positive variants, addressing tumor heterogeneity, establishment of workflows to address unsolicited findings, and data sharing and privacy concerns...
October 2017: Mayo Clinic Proceedings
Roel H P Wouters, Candice Cornelis, Ainsley J Newson, Eline M Bunnik, Annelien L Bredenoord
The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between "scanning the body" and "sequencing the genome" from an ethical perspective...
November 2017: Bioethics
Rhodé M Bijlsma, Hester Wessels, Roel H P Wouters, Anne M May, Margreet G E M Ausems, Emile E Voest, Annelien L Bredenoord
Next-generation sequencing (NGS) can be used to generate information about a patient's tumour and personal genome. This powerful diagnostic tool provides solicited and unsolicited hereditary genetic (risk) information that could have consequences for cancer patients and their quality of life. A well-defined approach for returning appropriate genetic risk information is needed in personalized cancer care. A qualitative design with semi-structured interviews was used. We conducted interviews with 24 Dutch patients with different types of cancer, both NGS-experienced and NGS-inexperienced, to learn their intentions, needs and preferences towards receiving unsolicited genetic information obtained using NGS...
August 29, 2017: Familial Cancer
John Hammond, Sylvie Marshall-Lucette, Nigel Davies, Fiona Ross, Ruth Harris
BACKGROUND: There is growing attention in the UK and internationally to the representation of black and minority ethnic groups in healthcare education and the workplace. Although the NHS workforce is very diverse, ethnic minorities are unevenly spread across occupations, and considerably underrepresented in senior positions. Previous research has highlighted that this inequality also exists at junior levels with newly qualified nurses from non-White/British ethnic groups being less likely to get a job at graduation than their White/British colleagues...
August 1, 2017: International Journal of Nursing Studies
Tien Ee Dominic Yeo, Tsz Hang Chu
Social media present opportunities and challenges for sexual health communication among young people. This study is one of the first to examine the actual use of Facebook for peer communication of sexual health and intimate relations. Content analysis of 2186 anonymous posts in a "sex secrets" Facebook page unofficially affiliated with a Hong Kong University shows gender balance among posters, inclusiveness of sexual minorities, and frequent sharing of personal experiences in storytelling or advice seeking...
September 2017: Journal of Health Communication
Danya F Vears, Karine Sénécal, Pascal Borry
While next-generation sequencing (NGS) has enormous potential to identify genetic causes of disease, the nature of the technology means that it can also identify additional information about the individual receiving sequencing that is unrelated to the original rationale for testing. Reporting these unsolicited findings (UF) to clinicians, and subsequently to patients, could lead to potentially lifesaving interventions. Most international guidelines provide limited specific recommendations as to whether these UF should be reported...
August 2017: Human Mutation
Xavier Sáez-Llorens, Vianney Tricou, Delia Yu, Luis Rivera, Suely Tuboi, Pedro Garbes, Astrid Borkowski, Derek Wallace
BACKGROUND: Dengue is the most common mosquito-borne viral disease in human beings, and vector control has not halted its spread worldwide. A dengue vaccine for individuals aged 9 years and older has been licensed, but there remains urgent medical need for a vaccine that is safe and effective against all four dengue virus serotypes (DENV-1-4) in recipients of all ages. Here, we present the preplanned interim analyses at 6 months of a tetravalent dengue vaccine candidate (TDV), which is comprised of an attenuated DENV-2 virus strain (TDV-2) and three chimeric viruses containing the premembrane and envelope protein genes of DENV-1, DENV-3, and DENV-4 genetically engineered into the attenuated TDV-2 genome backbone (TDV-1, TDV-3, and TDV-4)...
June 2017: Lancet Infectious Diseases
Jennifer Moloney, Margaret Walshe
AIM: Persons with dysphagia following stroke may experience uncomfortable symptoms such as persistent coughing, choking and poor salivary management. They may also spend long periods of time unable to eat or drink or with restrictions on oral intake. Experiences of dysphagia post-stroke are richly described in unsolicited narratives such as autobiographies on the stroke event, which often include details of the author's journey through their stroke recovery. The aim of this study is to use autobiographical accounts to explore the experiences of those living with dysphagia following stroke...
March 21, 2017: Disability and Rehabilitation
Paul M Wilson, Kate Farley, Liz Bickerdike, Alison Booth, Duncan Chambers, Mark Lambert, Carl Thompson, Rhiannon Turner, Ian S Watt
BACKGROUND: The Health and Social Care Act mandated research use as a core consideration of health service commissioning arrangements in England. We undertook a controlled before and after study to evaluate whether access to a demand-led evidence briefing service improved the use of research evidence by commissioners compared with less intensive and less targeted alternatives. METHODS: Nine Clinical Commissioning Groups (CCGs) in the North of England received one of three interventions: (A) access to an evidence briefing service; (B) contact plus an unsolicited push of non-tailored evidence; or (C) unsolicited push of non-tailored evidence...
February 14, 2017: Implementation Science: IS
Chad Hammond, Roanne Thomas, Wendy Gifford, Jennifer Poudrier, Ryan Hamilton, Carolyn Brooks, Tricia Morrison, Tracy Scott, Doris Warner
BACKGROUND: First Nations people with cancer in Canada confront several critical inequities in physical and psychosocial domains. First Nations women are at a particular disadvantage as they are disproportionately affected by social determinants of health, but how they navigate these challenges within their communities is poorly understood. OBJECTIVE: Our study explores survivorship experiences of First Nations women with cancer and their caregivers. Drawing from a larger data set on survivorship, we identify several major barriers to cancer communication and support in First Nations communities...
December 9, 2016: Psycho-oncology
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