Epigenetic Risk Assessment of Female Cancers: Women's Information Needs and Attitudes.

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 quality of life and care, women considering such assessment need to be able to make a fully informed choice. It is currently unknown what information they require. METHOD:We conducted 4 focus groups with 25 women (aged 30-65 years) to explore what they want to know about epigenetic cancer risk assessment, how they evaluate its usefulness, and how they would like to be informed about their risk. Independent coders categorised paraphrases based on transcribed recordings of the group discussions to enable a summarising text analysis. RESULTS:The women in the study wanted to understand how the epigenetic approach is different from established genomic tests, how epigenetic changes relate to cancer, and whether the test enables monitoring of one's cancer risk (n = 11). Furthermore, they desired information about their basic cancer risks (n = 11), about the quality of the assessment (n = 9), and about measures to deal with a risk result (n = 11). CONCLUSIONS:Informed consent in epigenetic cancer risk assessments depends on whether basic cancer risks, uncertainties of testing, and effects of tests on care management are transparently communicated prior to testing. These requirements are not limited to epigenetic testing. Accordingly, physicians and health authorities will have to provide multi-layered information when counselling women on cancer risk assessment.

journal_name

Public Health Genomics

journal_title

Public health genomics

authors

Rebitschek FG,Reisel D,Lein I,Wegwarth O

doi

10.1159/000501975

subject

Has Abstract

pub_date

2019-01-01 00:00:00

pages

46-57

issue

1-2

eissn

1662-4246

issn

1662-8063

pii

000501975

journal_volume

22

pub_type

杂志文章
  • Perspectives on Translational Genomics and Public Health in India.

    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

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

    更新日期:2016-01-01 00:00:00

  • Transfusion-dependent thalassemia in Northern Sarawak: a molecular study to identify different genotypes in the multi-ethnic groups and the importance of genomic sequencing in unstudied populations.

    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

    pub_type: 杂志文章

    doi:10.1159/000368342

    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

  • Debating clinical utility.

    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

    authors: Burke W,Laberge AM,Press N

    更新日期:2010-01-01 00:00:00

  • The Creation and Management of Innovations in Healthcare and ICT: The European and African Experience.

    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

    pub_type: 杂志文章

    doi:10.1159/000499853

    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

  • Influence of family history of cardiovascular disease on clinicians' preventive recommendations and subsequent adherence of patients without cardiovascular disease.

    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

    pub_type: 杂志文章

    doi:10.1159/000293991

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

    更新日期:2010-01-01 00:00:00

  • In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.

    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

    authors: Sabatello M,Zhang Y,Chen Y,Appelbaum PS

    更新日期:2020-01-01 00:00:00

  • Molecular mechanisms of human papillomavirus-induced carcinogenesis.

    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

    pub_type: 杂志文章,评审

    doi:10.1159/000214918

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

    更新日期:2009-01-01 00:00:00

  • Higher Odds of Type 2 Diabetes for Some Blood Groups.

    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

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

    更新日期:2020-01-01 00:00:00

  • Public health genomics in Spain: the status of a non-existing reality.

    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

    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

  • Capacity-building in human genetics for developing countries: initiatives and perspectives in sub-Saharan Africa.

    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

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

    更新日期:2010-01-01 00:00:00

  • Intentions to donate to a biobank in a national sample of African Americans.

    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

    pub_type: 杂志文章

    doi:10.1159/000360472

    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

  • Examining the Cascade of Participant Attrition in a Genomic Medicine Research Study: Barriers and Facilitators to Achieving Diversity.

    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

    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

  • National registries of rare diseases in Europe: an overview of the current situation and experiences.

    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

    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

  • Intellectual Disability in a Birth Cohort: Prevalence, Etiology, and Determinants at the Age of 4 Years.

    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

    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

  • Referral of Ovarian Cancer Patients for Genetic Counselling by Oncologists: Need for Improvement.

    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

    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

  • Opinions of children about participation in medical genetic research.

    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

    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

  • Turkish female immigrants' intentions to participate in preconception carrier screening for hemoglobinopathies in the Netherlands: an empirical study.

    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

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

    更新日期:2010-01-01 00:00:00

  • Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop.

    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

    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

  • Using a Historical Lens to Envision the Next Generation of Genomic Translation Research.

    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

    authors: McBride CM,Abrams LR,Koehly LM

    更新日期:2015-01-01 00:00:00

  • Professional education and training in public health genomics: a working policy developed on behalf of the public health genomics European network.

    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

    pub_type: 杂志文章

    doi:10.1159/000200019

    authors: Burton H,Adams M

    更新日期:2009-01-01 00:00:00

  • What can interest tell us about uptake of genetic testing? Intention and behavior amongst smokers related to patients with lung cancer.

    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

    authors: Sanderson SC,O'Neill SC,Bastian LA,Bepler G,McBride CM

    更新日期:2010-01-01 00:00:00

  • The cost effectiveness of screening newborns for congenital adrenal hyperplasia.

    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

    authors: Yoo BK,Grosse SD

    更新日期:2009-01-01 00:00:00

  • A model for the European platform for rare disease registries.

    abstract:BACKGROUND:The current situation of rare disease (RD) registries is rather heterogeneous, and new ways to support the registration of RD patients are being sought in the European Union (EU) and the US. The project 'Building Consensus and Synergies for the EU Registration of RD Patients', funded by the EU, aimed to defi...

    journal_title:Public health genomics

    pub_type: 杂志文章

    doi:10.1159/000355935

    authors: Vittozzi L,Gainotti S,Mollo E,Donati C,Taruscio D

    更新日期:2013-01-01 00:00:00

  • Testing an online, dynamic consent portal for large population biobank research.

    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

    pub_type: 杂志文章

    doi:10.1159/000366128

    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

  • Decision-Making Process Related to Participation in Phase I Clinical Trials: A Nonsystematic Review of the Existing Evidence.

    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

    authors: Gorini A,Mazzocco K,Pravettoni G

    更新日期:2015-01-01 00:00:00

  • Pharmacogenomics and the challenge of health disparities.

    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

    authors: Lee SS

    更新日期:2009-01-01 00:00:00

  • Psychological and behavioral responses to genetic test results indicating increased risk of obesity: does the causal pathway from gene to obesity matter?.

    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

    pub_type: 杂志文章

    doi:10.1159/000217794

    authors: Sanderson SC,Persky S,Michie S

    更新日期:2010-01-01 00:00:00

  • Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study.

    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

    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

  • The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research.

    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

    authors: Critchley C,Nicol D,Otlowski M

    更新日期:2015-01-01 00:00:00

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

    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

    pub_type: 杂志文章,评审

    doi:10.1159/000341500

    authors: Pang T

    更新日期:2013-01-01 00:00:00