Public and biobank participant attitudes toward genetic research participation and data sharing.

abstract：BACKGROUND:Stakeholders who are committed to bridge the gap in genetics services need to be aware of current initiatives in sub-Saharan Africa. METHODS:We reviewed selected experiences from African geneticists that led to specific recommendations. RESULTS:The initiation of prenatal diagnosis of sickle cell anaemia fo...

journal_title：Public health genomics

authors： Wonkam A,Muna W,Ramesar R,Rotimi CN,Newport MJ

更新日期：2010-01-01 00:00:00

abstract：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 wor...

journal_title：Public health genomics

authors： Nikolaidis C,Ming C,Pedrazzani C,van der Horst T,Kaiser-Grolimund A,Ademi Z,Bührer-Landolt R,Bürki N,Caiata-Zufferey M,Champion V,Chappuis PO,Kohler C,Erlanger TE,Graffeo R,Hampel H,Heinimann K,Heinzelmann-Schwarz V,Kur

更新日期：2018-01-01 00:00:00

abstract：:Genome-wide association studies and biobanks are at the forefront of genomics research and possess unprecedented potential to improve public health. However, for public health genomics to ultimately fulfill its potential, technological and scientific advances alone are insufficient. Scientists, ethicists, policy maker...

journal_title：Public health genomics

authors： Pang T

更新日期：2013-01-01 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：: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：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：OBJECTIVE:We explore the stability of parental attitudes to the ethical issues raised by the return of genomic research results. METHODS:A 19-item questionnaire was mailed to participants in a large genome research consortium 18 months following a baseline survey. We describe the stability of parental attitudes to (a)...

journal_title：Public health genomics

authors： Fernandez CV,OʼConnell C,Ferguson M,Orr AC,Robitaille JM,Knoppers BM,McMaster CR

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: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：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：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：: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：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：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：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：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：: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：: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: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：:Approximately 20% of all cancers are associated with infectious agents. Among them, human papillomaviruses (HPVs) are very common and are now recognized as the etiological agent of cervical cancer, the second most common cancer in women worldwide, and they are increasingly linked with other forms of dysplasia. Carcino...

journal_title：Public health genomics

authors： Lehoux M,D'Abramo CM,Archambault J

更新日期：2009-01-01 00:00:00

abstract：BACKGROUND:Genetic testing has been gradually permeating the practice of medicine. Health-care providers may be confronted with new genetic approaches that require genetically informed decisions which will be influenced by patients' knowledge of genetics and their attitudes toward genetic testing. This study assesses t...

journal_title：Public health genomics

authors： Olwi D,Merdad L,Ramadan E

更新日期：2016-01-01 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：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：: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：AIMS:The objective was to evaluate children's opinions about their participation in a large research project. METHODS:Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental causes of asthma). In tot...

journal_title：Public health genomics

authors： van der Pal S,Sozanska B,Madden D,Kosmeda A,Debinska A,Danielewicz H,Boznanski A,Detmar S

更新日期：2011-01-01 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：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：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：: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: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