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ethics privacy

Rowan Forbes Shepherd, Tamara Kayali Browne, Linda Warwick
Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it...
October 19, 2016: Journal of Genetic Counseling
Kathleen Charlebois, Nicole Palmour, Bartha Maria Knoppers
This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption...
2016: PloS One
Yutaka Imai
It has been confirmed that clinical significance of home blood pressure measurements (HBPM) is higher than clinic BP measurements and ambulatory BP monitoring. However, several drawbacks of HBPM have also been mentioned, e.g. selection and reporting biases, difficulties of calculation of multiple measurements, difficulties of onsite judgement of numerous recordings, etc. Recent devices for HBPM incorporate memory function. This function can overcome such drawbacks of HBPM. These memorized data can transmit, storage, retrieve, be arithmetic and control, be judged based on algorithm and be got feedback...
September 2016: Journal of Hypertension
Wolfgang Kuchinke, Christian Krauth, René Bergmann, Töresin Karakoyun, Astrid Woollard, Irene Schluender, Benjamin Braasch, Martin Eckert, Christian Ohmann
BACKGROUND: In an unprecedented rate data in the life sciences is generated and stored in many different databases. An ever increasing part of this data is human health data and therefore falls under data protected by legal regulations. As part of the BioMedBridges project, which created infrastructures that connect more than 10 ESFRI research infrastructures (RI), the legal and ethical prerequisites of data sharing were examined employing a novel and pragmatic approach. METHODS: We employed concepts from computer science to create legal requirement clusters that enable legal interoperability between databases for the areas of data protection, data security, Intellectual Property (IP) and security of biosample data...
July 7, 2016: BMC Medical Informatics and Decision Making
Ellen Brady, Julia Segar, Caroline Sanders
BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online...
October 13, 2016: Journal of Medical Internet Research
Rosamond Rhodes
The human microbiome is the collection of bacteria, viruses, and fungi that live on and in the human organism's skin, mucosa, and intestinal tract. Re-examining commonly accepted ethical standards from the perspective of this new area of research provides an opportunity to reassess our current thinking about research regulations as well as the importance of some principles and distinctions. In this commentary, I explain ethical issues illuminated by research on the human microbiome related to personal identity, privacy, property, research ethics, public health, and biobanks...
October 12, 2016: BMC Medicine
Ming-Ling Sher, Paul C Talley, Tain-Junn Cheng, Kuang-Ming Kuo
PURPOSE: The adoption of electronic medical records (EMR) is expected to better improve overall healthcare quality and to offset the financial pressure of excessive administrative burden. However, safeguarding EMR against potentially hostile security breaches from both inside and outside healthcare facilities has created increased patients' privacy concerns from all sides. The aim of our study was to examine the influencing factors of privacy protection for EMR by healthcare professionals...
October 4, 2016: HIM Journal
Maya Sabatello, S Appelbaum
This paper considers the ethical, legal, and social issues raised by the prospect of increasing use of psychiatric genetic data in child custody litigation. Although genetic tests cannot currently confirm a parent or child's psychiatric diagnosis, it is likely that as relevant findings emerge, they will be introduced in family courts to challenge parental capacity. Here, we draw on three projected, but plausible, scenarios for obtaining psychiatric data about parents -- imposed genetic testing, access to medical records, and genetic theft -- then consider the use of psychiatric genetic data of children, to highlight the issues that judges, child custody evaluators, and clinicians who may provide treatment for parents or children with mental health issues will need to consider...
September 2016: Current Genetic Medicine Reports
Marie-Pierre Gagnon, Julie Payne-Gagnon, Erik Breton, Jean-Paul Fortin, Lara Khoury, Lisa Dolovich, David Price, David Wiljer, Gillian Bartlett, Norman Archer
BACKGROUND: Healthcare stakeholders have a great interest in the adoption and use of electronic personal health records (ePHRs) because of the potential benefits associated with them. Little is known, however, about the level of adoption of ePHRs in Canada and there is limited evidence concerning their benefits and implications for the healthcare system. This study aimed to describe the current situation of ePHRs in Canada and explore stakeholder perceptions regarding barriers and facilitators to their adoption...
April 6, 2016: International Journal of Health Policy and Management
Camille Nebeker, Tiffany Lagare, Michelle Takemoto, Brittany Lewars, Katie Crist, Cinnamon S Bloss, Jacqueline Kerr
Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies...
September 29, 2016: Translational Behavioral Medicine
Shuang Wang, Xiaoqian Jiang, Siddharth Singh, Rebecca Marmor, Luca Bonomi, Dov Fox, Michelle Dow, Lucila Ohno-Machado
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...
September 28, 2016: Annals of the New York Academy of Sciences
Jeremy Snyder, Annalise Mathers, Valorie A Crooks
Crowdfunding involves raising money from large groups of individuals, often through the use of websites dedicated to this purpose. Crowdfunding campaigns aimed at raising money to pay for expenses related to receiving medical treatment are receiving increased media attention and there is evidence that medical crowdfunding websites are heavily used. Nonetheless, virtually no scholarly attention has been paid to these medical crowdfunding campaigns and there is no systematic evidence about how widely they are used and for what reasons, and what effects they have on the provision of medical care and individuals' relationships to their health systems...
September 16, 2016: Social Science & Medicine
Sonja L Myhre, Jane Kaye, Lee A Bygrave, Margunn Aanestad, Buthaina Ghanem, Patricia Mechael, J Frederik Frøen
BACKGROUND: The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services...
September 23, 2016: BMC Pregnancy and Childbirth
Sunny Sinha
While much has been said about the risks and safety issues experienced by female sex workers in India, there is a considerable dearth of information about the difficulties and problems that sex work researchers, especially female researchers, experience when navigating the highly political, ideological, and stigmatized environment of the Indian sex industry. As noted by scholars, there are several methodological and ethical issues involved with sex work research, such as privacy and confidentiality of the participants, representativeness of the sample, and informed consent...
September 19, 2016: Qualitative Health Research
Deepa Singal, Marni Brownell, Ana Hanlon-Dearman, Dan Chateau, Sally Longstaffe, Leslie L Roos
INTRODUCTION: Fetal alcohol spectrum disorder (FASD) is a significant public health concern. To prevent FASD, factors that place women at risk for giving birth to children with FASD must be investigated; however, there are little data in this area. This paper describes the development of the Manitoba mothers and FASD study, a retrospective cohort of mothers whose children were diagnosed with FASD, generated to investigate: (1) risk factors associated with giving birth to children with FASD; (2) maternal physical and health outcomes, as well as the usage of health and social services...
2016: BMJ Open
Yutaka Imai
It has been confirmed that clinical significance of home blood pressure measurements (HBPM) is higher than clinic BP measurements and ambulatory BP monitoring. However, several drawbacks of HBPM have also been mentioned, e.g. selection and reporting biases, difficulties of calculation of multiple measurements, difficulties of onsite judgement of numerous recordings, etc. Recent devices for HBPM incorporate memory function. This function can overcome such drawbacks of HBPM. These memorized data can transmit, storage, retrieve, be arithmetic and control, be judged based on algorithm and be got feedback...
September 2016: Journal of Hypertension
Greg Stapleton
In the near future developments in non-invasive prenatal testing (NIPT) may soon provide couples with the opportunity to test for and diagnose a much broader range of heritable and congenital conditions than has previously been possible. Inevitably, this has prompted much ethical debate on the possible implications of NIPT for providing couples with opportunities for reproductive choice by way of routine prenatal screening. In view of the possibility to test for a significantly broader range of genetic conditions with NIPT, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) recommend that, pending further debate, prenatal screening for reproductive choice should only be offered where concerning serious congenital conditions and childhood disorders...
September 8, 2016: Medicine, Health Care, and Philosophy
Xinghua Shi, Xintao Wu
The study of human genomics is becoming a Big Data science, owing to recent biotechnological advances leading to availability of millions of personal genome sequences, which can be combined with biometric measurements from mobile apps and fitness trackers, and of human behavior data monitored from mobile devices and social media. With increasing research opportunities for integrative genomic studies through data sharing, genetic privacy emerges as a legitimate yet challenging concern that needs to be carefully addressed, not only for individuals but also for their families...
September 14, 2016: Annals of the New York Academy of Sciences
Xiaowei Su, Peter B Kang, James A Russell, Zachary Simmons
Genetic testing is rapidly becoming an increasingly significant part of the diagnostic armamentarium of neuromuscular clinicians. Although technically easy to order, the results of such testing, whether positive or negative, have potentially enormous consequences for the individual tested and for family members. As a result, ethical considerations must be in the forefront of the physician's agenda when obtaining genetic testing. Informed consent is an important starting point for discussions between physicians and patients, but the counseling embedded in the informed consent process must be an ongoing part of subsequent interactions, including return of results and follow-up...
September 12, 2016: Muscle & Nerve
Kieran C O'Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A Koenig, Donald J Willison
BACKGROUND: Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections...
2016: BMC Medical Ethics
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