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 thus identified in 2006 as a key issue by the Public Health Genomics European Network (PHGEN). This paper provides an outline of the educational needs and practical proposals for the development of PHG education based on a resourced educational network that will undertake work on competences, the identification and sharing of current educational resources, and the development of programs in a variety of media and settings including highly specialist resources for researchers or individuals specializing in this area of policy.
journal_name
Public Health Genomicsjournal_title
Public health genomicsauthors
Burton H,Adams Mdoi
10.1159/000200019subject
Has Abstractpub_date
2009-01-01 00:00:00pages
216-24issue
4eissn
1662-4246issn
1662-8063pii
000200019journal_volume
12pub_type
杂志文章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
pub_type: 杂志文章
doi:10.1159/000156115
更新日期:2009-01-01 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
pub_type: 杂志文章
doi:10.1159/000189630
更新日期:2009-01-01 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
pub_type: 杂志文章,评审
doi:10.1159/000441559
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000490519
更新日期:2017-01-01 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
pub_type: 杂志文章
doi:10.1159/000314643
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
pub_type: 杂志文章
doi:10.1159/000335550
更新日期:2012-01-01 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
pub_type: 杂志文章
doi:10.1159/000455006
更新日期:2017-01-01 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
pub_type: 杂志文章
doi:10.1159/000279623
更新日期:2010-01-01 00:00:00
abstract:BACKGROUND:Much of the research examining psychosocial aspects of genetic testing has used hypothetical scenarios, based on the largely untested assumption that hypothetical genetic testing intentions are good proxies for behavior. We tested whether hypothetical interest predicts uptake of genetic testing and whether f...
journal_title:Public health genomics
pub_type: 杂志文章,多中心研究
doi:10.1159/000226595
更新日期:2010-01-01 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
pub_type: 杂志文章
doi:10.1159/000431352
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000272457
更新日期:2010-01-01 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
pub_type: 杂志文章
doi:10.1159/000294151
更新日期:2011-01-01 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
pub_type: 杂志文章,评审
doi:10.1159/000342770
更新日期:2012-01-01 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
pub_type: 杂志文章
doi:10.1159/000509120
更新日期:2020-01-01 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
pub_type: 杂志文章
doi:10.1159/000448912
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
pub_type: 杂志文章
doi:10.1159/000365897
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000506294
更新日期:2020-01-01 00:00:00
abstract:PURPOSE:Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, espec...
journal_title:Public health genomics
pub_type: 杂志文章
doi:10.1159/000506599
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
pub_type: 杂志文章
doi:10.1159/000375441
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000439244
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000446511
更新日期:2016-01-01 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
pub_type: 杂志文章
doi:10.1159/000294173
更新日期:2011-01-01 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
pub_type: 杂志文章
doi:10.1159/000435832
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000496495
更新日期:2018-01-01 00:00:00
abstract::While personalised cancer medicine holds great promise, targeting therapies to the biological characteristics of patients is limited by the number of validated biomarkers currently available. The implementation of biomarkers has undergone many challenges with few biomarkers reaching cancer patients in the clinic. Ther...
journal_title:Public health genomics
pub_type: 杂志文章
doi:10.1159/000441556
更新日期:2015-01-01 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
pub_type: 杂志文章
doi:10.1159/000343793
更新日期:2013-01-01 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
pub_type: 杂志文章
doi:10.1159/000294171
更新日期:2010-01-01 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
pub_type: 杂志文章
doi:10.1159/000501975
更新日期:2019-01-01 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
pub_type: 杂志文章,随机对照试验
doi:10.1159/000336419
更新日期:2012-01-01 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
pub_type: 杂志文章
doi:10.1159/000442518
更新日期:2016-01-01 00:00:00