Opinions of children about participation in medical genetic research.

abstract：BACKGROUND/AIMS:Despite the investments being made to develop biobanks, African Americans are under-represented in genomic studies. We identified factors having significant independent associations with intentions to donate personal health information and blood and/or tissue samples to a biobank in a national random sa...

journal_title：Public health genomics

authors： McDonald JA,Vadaparampil S,Bowen D,Magwood G,Obeid JS,Jefferson M,Drake R,Gebregziabher M,Hughes Halbert C

更新日期：2014-01-01 00:00:00

abstract：BACKGROUND:Cancer risk assessment should stratify screening and enable preventive health interventions based on individuals' risk of developing cancer. Studies are underway to develop epigenetic tests, including trials investigating women's risk of female-specific cancers. OBJECTIVE:Given potential consequences for qu...

journal_title：Public health genomics

authors： Rebitschek FG,Reisel D,Lein I,Wegwarth O

更新日期：2019-01-01 00:00:00

abstract：:In order to follow population-based approaches for certain causes and risks of illnesses, more and more biobanks have been set up during the last years. Here, samples and personal data of the donors are collected and saved, whereby concrete research aims, at the time of storage of the bio-probes and the related data, ...

journal_title：Public health genomics

authors： Taupitz J,Weigel J

更新日期：2012-01-01 00:00:00

abstract：BACKGROUND:Family history of cardiovascular disease (CVD) is an independent risk factor for CVD. Therefore, efforts to prevent CVD among asymptomatic persons with a family history are warranted. Little is known about preventive recommendations clinicians offer their patients with a family history of CVD, and adherence ...

journal_title：Public health genomics

authors： Zlot AI,Valdez R,Han Y,Silvey K,Leman RF

更新日期：2010-01-01 00:00:00

abstract：BACKGROUND:New genetic associations with obesity are rapidly being discovered. People's causal beliefs about obesity may influence their obesity-related behaviors. Little is known about genetic compared to lifestyle causal beliefs regarding obesity, and obesity-related diseases, among minority populations. This study e...

journal_title：Public health genomics

authors： Sanderson SC,Diefenbach MA,Streicher SA,Jabs EW,Smirnoff M,Horowitz CR,Zinberg R,Clesca C,Richardson LD

更新日期：2013-01-01 00:00:00

abstract：:The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in ...

journal_title：Public health genomics

authors： Taruscio D,Vittozzi L,Choquet R,Heimdal K,Iskrov G,Kodra Y,Landais P,Posada M,Stefanov R,Steinmueller C,Swinnen E,Van Oyen H

更新日期：2015-01-01 00:00:00

abstract：:The purpose of the study was to gain new insights into innovation systems by comparing state-of-the-art of existing approaches of innovation creation and innovation management in healthcare and ICT. It is unique, in that it compares countries in Africa with countries in Europe in order to identify similarities and dif...

journal_title：Public health genomics

authors： Schee Genannt Halfmann S,Evangelatos N,Kweyu E,DeVilliers C,Steinhausen K,van der Merwe A,Brand A

更新日期：2018-01-01 00:00:00

abstract：:Prenatal/preconceptional and newborn screening programs have been a focus of recent policy debates that have included attention to ethical, legal, and social issues (ELSIs). In parallel, there has been an ongoing discussion about whether and how ELSIs may be addressed in health technology assessment (HTA). We conducte...

journal_title：Public health genomics

authors： Potter BK,Avard D,Entwistle V,Kennedy C,Chakraborty P,McGuire M,Wilson BJ

更新日期：2009-01-01 00:00:00

abstract：BACKGROUND:Michigan's BioTrust for Health, a public health research biobank comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges i...

journal_title：Public health genomics

authors： Thiel DB,Platt J,Platt T,King SB,Fisher N,Shelton R,Kardia SL

更新日期：2015-01-01 00:00:00

abstract：:Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward r...

journal_title：Public health genomics

authors： Lemke AA,Wolf WA,Hebert-Beirne J,Smith ME

更新日期：2010-01-01 00:00:00

abstract：AIMS:The Public Health Genomics European Network (PHGEN) aimed, among other objectives, to identify the geographical variability and legal barriers of genomic medicine and public health genomics (PHG) at an international market, where the lack of policy coherence may limit its development in Europe. PHGEN supported the...

journal_title：Public health genomics

authors： Gutiérrez-Ibarluzea I,Ibarreta D,Malats N,Spanish National Task Force on Public Health Genomics.

更新日期：2012-01-01 00:00:00

abstract：:Addressing the unmet health needs of persons living with congenital anomalies in low- and middle-income countries (LMIC) is a major challenge. Registries and databases are exemplary tools capable to link research data with health programs. Since 2009, Brazil's Craniofacial Project, a multicenter and voluntary research...

journal_title：Public health genomics

authors： Gil-da-Silva-Lopes VL,Fontes MIB,Dos Santos AP,Appenzeller S,Fett-Conte AC,Francisquetti MCC,Monlleó IL

更新日期：2019-01-01 00:00:00

abstract：BACKGROUND:Although thalassemia is a genetic hemoglobinopathy in Malaysia, there is limited data on thalassemia mutations in the indigenous groups. This study aims to identify the types of globin gene mutations in transfusion-dependent patients in Northern Sarawak. METHODS:Blood was collected from 32 patients from the...

journal_title：Public health genomics

authors： Tan JA,Chin SS,Ong GB,Mohamed Unni MN,Soosay AE,Gudum HR,Kho SL,Chua KH,Chen JJ,George E

更新日期：2015-01-01 00:00:00

abstract：BACKGROUND:Nutrigenetic tests are often considered to be less serious compared to other health-related genetic tests, although they share similar ethical concerns. Nutrigenetic tests are mainly available through direct-to-consumer genetic testing (DTC GT) and increasing in popularity. OBJECTIVE:To analyze the contents...

journal_title：Public health genomics

authors： De S,Pietilä AM,Iso-Touru T,Hopia A,Tahvonen R,Vähäkangas K

更新日期：2019-01-01 00:00:00

abstract：BACKGROUND/AIMS:Nearly 15% of all ovarian cancer patients carry a germline BRCA mutation. A pilot project was started at IRCCS AOU San Martino--IST, Genoa, to assess the feasibility and consequences of offering genetic counselling to all ovarian cancer patients during routine oncology appointments. We present early res...

journal_title：Public health genomics

authors： Ricci MT,Sciallero S,Mammoliti S,Gismondi V,Franiuk M,Bruzzi P,Varesco L

更新日期：2015-01-01 00:00:00

abstract：:It is now recognized worldwide that anticipation and prevention of diseases have significant advantages for the health and healthy ageing of the population. Early recognition of the disease in a vulnerable population such as in children aged <5 years and adults aged >60 years enhances our preparedness for any eventual...

journal_title：Public health genomics

authors： Chakrabarty S,Kabekkodu SP,Brand A,Satyamoorthy K

更新日期：2016-01-01 00:00:00

abstract：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 conti...

journal_title：Public health genomics

authors： Moore EG,Roche M,Rini C,Corty EW,Girnary Z,O'Daniel JM,Lin FC,Corbie-Smith G,Evans JP,Henderson GE,Berg JS

更新日期：2017-01-01 00:00:00

abstract：:This paper examines emerging technologies and recent research on population differences in pharmacogenomics and the perspectives of scientists, community advocates, policymakers, and social critics on the use of race as a proxy for genetic variation. The discussion focuses on how recent developments in genomic science...

journal_title：Public health genomics

authors： Lee SS

更新日期：2009-01-01 00:00:00

abstract：BACKGROUND:Preconception carrier screening for hemoglobinopathies (HbPs) is debated in the Netherlands. OBJECTIVES:Intentions to participate in preconception carrier screening for HbPs as well as informed reproductive options were assessed in 109 Turkish female immigrants. METHOD:Participants completed a structured q...

journal_title：Public health genomics

authors： van Elderen T,Mutlu D,Karstanje J,Passchier J,Tibben A,Duivenvoorden HJ

更新日期：2010-01-01 00:00:00

abstract：:The clinical utility of genetic tests is determined by the outcomes following test use. Like other measures of value, it is often contested. Stakeholders may have different views about benefits and risks and about the importance of social versus health outcomes. They also commonly disagree about the evidence needed to...

journal_title：Public health genomics

authors： Burke W,Laberge AM,Press N

更新日期：2010-01-01 00:00:00

abstract：BACKGROUND:The past 20 years have witnessed successive and exponential advances in genomic discovery and technology, with a broad scientific imperative pushing for continual advancements. The most consistent critique of these advances is that they have vastly outpaced translation of new knowledge into improvements in p...

journal_title：Public health genomics

authors： McBride CM,Abrams LR,Koehly LM

更新日期：2015-01-01 00:00:00

abstract：BACKGROUND:Intellectual disability (ID), characterized by impairments in intellectual function and adaptive behavior, affects 1-3% of the population. Many studies investigated its etiology, but few are cohort studies in middle-income countries. AIMS:To estimate prevalence, etiology, and factors related to ID among chi...

journal_title：Public health genomics

authors： Karam SM,Barros AJ,Matijasevich A,Dos Santos IS,Anselmi L,Barros F,Leistner-Segal S,Félix TM,Riegel M,Maluf SW,Giugliani R,Black MM

更新日期：2016-01-01 00:00:00

abstract：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 R...

journal_title：Public health genomics

authors： Schreuder K,Kuijer A,Bentum S,van Dalen T,Siesling S

更新日期：2018-01-01 00:00:00

abstract：BACKGROUND:Disease outbreak investigation is a key aspect of public health. Whole-genome sequencing of bacterial pathogen based on new generation high-throughput sequencing technologies has facilitated outbreak investigations recently. Whilst the approach has become more affordable and accessible to research and clinic...

journal_title：Public health genomics

authors： Cheung MK,Kwan HS

更新日期：2012-01-01 00:00:00

abstract：OBJECTIVE:To assess the cost effectiveness of newborn screening for congenital adrenal hyperplasia (CAH) in the U.S. newborn population. METHODS:We constructed a decision model to estimate the incremental cost-effectiveness ratio (ICER) of CAH screening compared to a strategy of no screening. Two types of cost effecti...

journal_title：Public health genomics

authors： Yoo BK,Grosse SD

更新日期：2009-01-01 00:00:00

abstract：INTRODUCTION:Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. ...

journal_title：Public health genomics

authors： Owen-Smith AA,Sesay MM,Lynch FL,Massolo M,Cerros H,Croen LA

更新日期：2020-01-01 00:00:00

abstract：OBJECTIVES:The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to part...

journal_title：Public health genomics

authors： Critchley C,Nicol D,Otlowski M

更新日期：2015-01-01 00:00:00

abstract：:Public health genomics (PHG) is an area of public health that is vital if we are to ensure that scientific advances in genomics are effectively and responsibly translated into public and health policies. Education and training in PHG for relevant professionals in public health and wider health and public policy was th...

journal_title：Public health genomics

authors： Burton H,Adams M

更新日期：2009-01-01 00:00:00

abstract：BACKGROUND/AIMS:To describe the interests, decision making, and responses of consumers of direct-to-consumer personal genomic testing (DTC-PGT) services. METHODS:Prior to 2013 regulatory restrictions on DTC-PGT services, 1,648 consumers from 2 leading companies completed Web surveys before and after receiving test res...

journal_title：Public health genomics

authors： Roberts JS,Gornick MC,Carere DA,Uhlmann WR,Ruffin MT,Green RC

更新日期：2017-01-01 00:00:00

abstract：BACKGROUND:Diabetes is one of the most common metabolic diseases in humans that cause disruption in glucose and fat metabolism. The determination of the ABO blood group system is hereditary and both diabetes and blood groups have a genetic basis. OBJECTIVES:The aim of this study was to investigate the odds of type 2 d...

journal_title：Public health genomics

authors： Navabi J,Navabi SM,Hemmati N,Shaahmadi Z,Aghaei A

更新日期：2020-01-01 00:00:00