Genomics for public health improvement: relevant international ethical and policy issues around genome-wide association studies and biobanks.

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: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：: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：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：: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：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: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：BACKGROUND:Identification of low-income women with the rare but serious risk of hereditary cancer and their referral to appropriate services presents an important public health challenge. We report the results of formative research to reach thousands of women for efficient identification of those at high risk and exped...

journal_title：Public health genomics

authors： Joseph G,Kaplan C,Luce J,Lee R,Stewart S,Guerra C,Pasick R

更新日期：2012-01-01 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：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: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：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：BACKGROUND:Post kala-azar dermal leishmaniasis (PKDL) is a cutaneous form of disease that develops at variable times after individuals have received treatment for clinical visceral leishmaniasis (VL). The study aimed to investigate the possible role of interleukin 10 (IL-10) and development of PKDL. METHODS:77 familie...

journal_title：Public health genomics

authors： Farouk S,Salih MA,Musa AM,Blackwell JM,Miller EN,Khalil EA,Elhassan AM,Ibrahim ME,Mohamed HS

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/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: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：:Due to the lack of other treatment options, patient candidates for participation in phase I clinical trials are considered the most vulnerable, and many ethical concerns have emerged regarding the informed consent process used in the experimental design of such trials. Starting with these considerations, this nonsyste...

journal_title：Public health genomics

authors： Gorini A,Mazzocco K,Pravettoni G

更新日期：2015-01-01 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:Common obesity-associated genetic variants may exert their effects through increasing eating or decreasing metabolism. Such differences might influence individual responses to obesity genetic test results. METHODS:This was an experimental analogue study: 191 participants were asked to imagine they had recei...

journal_title：Public health genomics

authors： Sanderson SC,Persky S,Michie S

更新日期：2010-01-01 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: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/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:Individuals with a family history of lung cancer have a two- to threefold increased risk for developing this disease. Family history information may be useful in lung cancer prevention and control approaches, but research is needed regarding how individuals interpret this information. This study examined ass...

journal_title：Public health genomics

authors： Chen LS,Kaphingst KA

更新日期：2011-01-01 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：: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: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：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：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