Summary: Research into the cause, transmission, amelioration, elimination, or enhancement of inherited disorders and traits.
Publications241 found, 100 shown here
- Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working groupRichard R Fabsitz
Division of Cardiovascular Sciences, National Heart, Lung, and Blood Institute, Epidemiology Branch, 6701 Rockledge Drive MSC 7935, Bethesda, MD20892, USA
Circ Cardiovasc Genet 3:574-80. 2010..of a 2004 National Heart, Lung, and Blood Institute Working Group focused on Guidelines to the Return of Genetic Research Results...
- Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics researchHolly K Tabor
Department of Pediatrics, University of Washington, Seattle, Washington, USA
Am J Med Genet A 155:2916-24. 2011..We provide broad guidance about interim ways to contend with these issues and make broad recommendations for areas for novel resource and policy development...
- Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in KenyaVicki M Marsh
Kenya Medical Research Institute KEMRI Wellcome Trust Research Programme, Kilifi, Kenya
BMC Med Ethics 11:13. 2010....
- Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative studyFasil Tekola
School of Public Health, Addis Ababa University, Addis Ababa, Ethiopia
BMC Med Ethics 10:13. 2009..The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia...
- How to interpret a genome-wide association studyThomas A Pearson
Office of Population Genomics, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland 20892 2154, USA
JAMA 299:1335-44. 2008..This article describes the design, interpretation, application, and limitations of GWA studies for clinicians and scientists for whom this evolving science may have great relevance...
- Feedback of individual genetic results to research participants: in favor of a qualified disclosure policyAnnelien L Bredenoord
Department of Medical Ethics, University Medical Center Utrecht, Division Julius Center, Utrecht, The Netherlands
Hum Mutat 32:861-7. 2011This article discusses whether and when researchers have a moral obligation to feedback individual genetic research results...
- Internet cognitive testing of large samples needed in genetic researchClaire M A Haworth
Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, King s College London, London, United Kingdom
Twin Res Hum Genet 10:554-63. 2007Quantitative and molecular genetic research requires large samples to provide adequate statistical power, but it is expensive to test large samples in person, especially when the participants are widely distributed geographically...
- Public expectations for return of results from large-cohort genetic researchJuli Murphy
Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC 20036, USA
Am J Bioeth 8:36-43. 2008..Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received...
- Voluntary participation and informed consent to international genetic researchPatricia A Marshall
Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio 44106 4976, USA
Am J Public Health 96:1989-95. 2006..We compared voluntary participation and comprehension of informed consent among individuals of African ancestry enrolled in similarly designed genetic studies of hypertension in the United States and Nigeria...
- Subjects matter: a survey of public opinions about a large genetic cohort studyDavid Kaufman
Genetics and Public Policy Center, Johns Hopkins University, Washington, DC 20036, USA
Genet Med 10:831-9. 2008..To this end, 4659 Americans were surveyed about support for and willingness to participate in a proposed large cohort study...
- Investigating the potential for ethnic group harm in collaborative genomics research in Africa: is ethnic stigmatisation likely?Jantina de Vries
The Ethox Centre, Department of Public Health, University of Oxford, UK
Soc Sci Med 75:1400-7. 2012....
- IRB perspectives on the return of individual results from genomic researchLynn G Dressler
Institute for Pharmacogenomics and Individualized Therapy, University of North Carolina, Chapel Hill, NC, USA
Genet Med 14:215-22. 2012..However, the perspective of key stakeholders-institutional review board (IRB) professionals-has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue...
- Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among FinnsAaro Tupasela
Department of Sociology, University of Helsinki, Helsinki, Finland
Scand J Public Health 38:46-52. 2010..To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns...
- The adequacy of informed consent forms in genetic research in Oman: a pilot studyAsya Al-Riyami
Ministry of Health, Oman and Research and Ethics Committee, Sultanate of Oman
Dev World Bioeth 11:57-62. 2011b>Genetic research presents ethical challenges to the achievement of valid informed consent, especially in developing countries with areas of low literacy...
- The effect of next-generation sequencing technology on complex trait researchAaron G Day-Williams
Wellcome Trust Sanger Institute, Hinxton, Cambridge, UK
Eur J Clin Invest 41:561-7. 2011..Advances in the understanding of complex trait genetics have always been enabled by advances in genomic technology. Next-generation sequencing (NGS) is set to revolutionize the way complex trait genetics research is carried out...
- Transforming genetic research practices with marginalized communities: a case for responsive justiceSara Goering
Hastings Cent Rep 38:43-53. 2008....
- Pathophysiology of asthma: lessons from genetic research with particular focus on severe asthmaE Melen
Institute of Environmental Medicine and Centre for Allergy Research, Karolinska Institutet, Stockholm, Sweden
J Intern Med 272:108-20. 2012..Finally, we discuss how genetic and environmental factors jointly influence asthma susceptibility and summarize how the results may increase understanding of the pathophysiology of asthma-related diseases...
- Cohort Profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illnessBlair H Smith
Medical Research Institute, University of Dundee, Dundee, UK
Int J Epidemiol 42:689-700. 2013..These features were designed to maximize the power of the resource to identify, replicate or control for genetic factors associated with a wide spectrum of illnesses and risk factors, both now and in the future...
- Researchers' preferences and attitudes on ethical aspects of genomics research: a comparative study between the USA and SpainM Ruiz-Canela
Department of Biomedical Humanities, University of Navarra, Pamplona Spain
J Med Ethics 35:251-7. 2009..However, there are no quantitative data regarding researchers' attitudes about these issues...
- Informed consent in genomics and genetic researchAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Annu Rev Genomics Hum Genet 11:361-81. 2010..All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible...
- Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group studyJuli Murphy Bollinger
Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA
Genet Med 14:451-7. 2012People are interested in receiving their individual research results in exchange for participating in genetic research. However, it is unclear whether the public understands the nature and limitations of these results and whether they ..
- Researcher perspectives on disclosure of incidental findings in genetic researchMeredith C Meacham
University of Washington s Institute of Public Health Genetics Master of Public Health program, Seattle, WA 98195 7120, USA
J Empir Res Hum Res Ethics 5:31-41. 2010b>Genetic research can produce information that is beyond the aims of the research study yet may be of clinical or personal interest to study participants...
- Opinions of children about participation in medical genetic researchS van der Pal
TNO Quality of Life, Prevention and Health, Youth Department, Leiden, The Netherlands
Public Health Genomics 14:271-8. 2011..The objective was to evaluate children's opinions about their participation in a large research project...
- Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?Asa Kettis-Lindblad
Department of Pharmacy, Uppsala University, Sweden
Eur J Public Health 16:433-40. 2006....
- Clinical utility and full disclosure of genetic results to research participantsRichard R Sharp
Center for Medical Ethics and Health Policy, Baylor College of Medicine, USA
Am J Bioeth 6:42-4; author reply W10-2. 2006
- Obligations in offering to disclose genetic research resultsConrad V Fernandez
Dalhousie University, Canada
Am J Bioeth 6:44-6; author reply W10-2. 2006
- DNA on loan: issues to consider when carrying out genetic research with aboriginal families and communitiesLaura Arbour
University of British Columbia, Vancouver, Canada
Community Genet 9:153-60. 2006..This paper will explore practical ways of maintaining a respectful research relationship when genetics research with aboriginal people is undertaken...
- Two large-scale surveys on community attitudes toward an opt-out biobankKyle B Brothers
Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, Tennessee 37203, USA
Am J Med Genet A 155:2982-90. 2011....
- Genotyping technologies for genetic researchJiannis Ragoussis
Genomics Laboratory, Wellcome Trust Centre for Human Genetics, Oxford University, Oxford OX3 7BN, United Kingdom
Annu Rev Genomics Hum Genet 10:117-33. 2009..It is anticipated that in the future, sample throughput and cost savings will be increased further through the combination of automation, microfluidics, and nanotechnologies...
- Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experienceGeraldine M McQuillan
Division of Health and Nutrition Examination Surveys, National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland 20782, USA
Genet Med 8:354-60. 2006..The study determines the consent rates for storage of biologic samples for future research with and without genetic studies and describes trends in sociodemographic factors associated with consent...
- Consent for genetic research in the Framingham Heart StudyDaniel Levy
Center for Population Studies, National Heart, Lung, and Blood Institute, Bethesda, MA 01702, USA
Am J Med Genet A 152:1250-6. 2010..We concluded that the FHS has maintained high rates of retention and consent for genetic research that has provided the scientific freedom to establish collaborations and address a broad range of research ..
- Disclosure of individual genetic data to research participants: the debate reconsideredAnnelien L Bredenoord
University Medical Center Utrecht, Julius Center for Health Sciences and Primary Care, Department of Medical Ethics, Stratenum 6 131, PO Box 85500, 3508 GA Utrecht, The Netherlands
Trends Genet 27:41-7. 2011..We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance ..
- The return of individual research findings in paediatric genetic researchKristien Hens
Katholieke Universiteit Leuven, Centre for Biomedical Ethics and Law, Kapucijnenvoer 35 3 Box 7001, 3000 Leuven, Belgium
J Med Ethics 37:179-83. 2011..Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant's autonomy and the duty of the researcher...
- Ethics. Identifiability in genomic researchWilliam W Lowrance
Science 317:600-2. 2007
- Undesirable implications of disclosing individual genetic results to research participantsLeslie A Meltzer
Georgetown University Law Center, USA
Am J Bioeth 6:28-30; author reply W10-2. 2006
- Public willingness to participate in and public opinions about genetic variation research: a review of the literatureRene Sterling
School of Public Health, University of North Carolina, Chapel Hill, NC 27599 7240, USA
Am J Public Health 96:1971-8. 2006..We review empirical studies of public willingness to participate in and opinions about genetic research with particular attention to differences in consent and opinion by racial/ethnic group membership.
- Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinionDavid Kaufman
Genetics and Public Policy Center, Johns Hopkins University, Washington DC, USA
Am J Med Genet C Semin Med Genet 148:31-9. 2008..To successfully include children, proposed cohort study would need to address children's changing capabilities and rights as they grow and reach the age of consent...
- Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countriesNola M Ries
Health Law Institute, Law Centre, University of Alberta, Edmonton, T6G 2H5, Canada
BMC Med Ethics 11:4. 2010..The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research ..
- Genetic research on stored tissue samples from minors: a systematic review of the ethical literatureKristien Hens
Katholieke Universiteit Leuven, Centre for Biomedical Ethics and Law, Leuven, Belgium
Am J Med Genet A 149:2346-58. 2009The potential benefits of biobank research are well known. Also, the ethical implications of genetic research on stored tissue samples are well discussed in existing literature...
- Barriers to translating emerging genetic research on smoking into clinical practice. Perspectives of primary care physiciansAlexandra E Shields
Health Policy Institute, Georgetown Public Policy Institute, Georgetown University, Washington, DC 20007, USA
J Gen Intern Med 20:131-8. 2005..Our objective was to assess primary care physicians' attitudes toward new genetic-based approaches to smoking treatment...
- Biological sample collections from minors for genetic research: a systematic review of guidelines and position papersKristien Hens
Centre for Biomedical Ethics and Law, Leuven, Belgium
Eur J Hum Genet 17:979-90. 2009Stored tissue samples are an important resource for epidemiological genetic research. Genetic research on biological material from minors can yield valuable information on the development and genesis of early-onset genetic disorders and ..
- Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategiesNina Hallowell
Department of Public Health Sciences, University of Edinburgh, Edinburgh, UK
Soc Sci Med 68:2010-7. 2009..Finally, we discuss the implications of these findings for the process of informed consent...
- North-South benefit sharing arrangements in bioprospecting and genetic research: a critical ethical and legal analysisUdo Schuklenk
Centre for Ethics in Public Policy and Corporate Governance, Glasgow Caledonian University, Glasgow, UK
Dev World Bioeth 6:122-34. 2006..Benefit sharing arrangements for the use of indigenous resources and genetic research could only marginally address this gap in research and development in diseases that affect the poor...
- Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-upBriana Mezuk
Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD 21205, USA
Community Genet 11:171-8. 2008....
- Employees' perspectives on ethically important aspects of genetic research participation: a pilot studyLaura Weiss Roberts
Department of Psychiatry and Behavioral Medicine, Medical College of Wisconsin, Milwaukee, WI 53226, USA
Compr Psychiatry 46:27-33. 2005Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease...
- Research governance, bio-politics and political will: recent lessons from Newfoundland and LabradorDaryl Pullman
Memorial University of Newfoundland, St John s, Canada
Health Law Rev 13:75-9. 2005
- Ethical issues arising from the participation of children in genetic researchWylie Burke
Department of Medical History and Ethics, University of Washington, Seattle 98195 7120, USA
J Pediatr 149:S34-8. 2006With new tools derived from the Human Genome Project, genetic research is expanding from the study of rare, single gene disorders to the evaluation of genetic contributors to common, complex diseases...
- The cognitive neuroscience of response inhibition: relevance for genetic research in attention-deficit/hyperactivity disorderAdam R Aron
Department of Psychology and Brain Research Institute, University of California, Los Angeles, California 90095, USA
Biol Psychiatry 57:1285-92. 2005..Moreover, a dissection of response inhibition into more basic components such as rule maintenance, vigilance, and target detection may provide yet better targets for association with genes for neuromodulation and brain development...
- Electronic medical records for genetic research: results of the eMERGE consortiumAbel N Kho
Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA
Sci Transl Med 3:79re1. 2011..Efforts and incentives to increase the implementation of interoperable EMRs will markedly improve the availability of clinical data for genomics research...
- Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protectionAmy A Lemke
Center for Genetic Medicine, Northwestern University, Chicago, IL 60611, USA
J Empir Res Hum Res Ethics 5:83-91. 2010..the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic ..
- Tracing the use and source of racial terminology in representations of genetic researchChristen Rachul
Health Law Institute, University of Alberta, Edmonton, Alberta, Canada
Genet Med 13:314-9. 2011We examined the terminology used to describe populations in genetic research to understand how and when terminology is being used, changed, and framed.
- Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibilityChristopher A Cassa
Children s Hospital Informatics Program, Children s Hospital Boston, Boston, Massachusetts 02115, USA
Genome Res 22:421-8. 2012..Additionally, if the growth rate from the previous 4 yr continues, we estimate that the total number of disease-associated variants will grow 37% over the next 4 yr...
- Incidental findings in genetic research and clinical diagnostic tests: a systematic reviewLeigh Jackson
School of Nursing and Midwifery, Plymouth University, Plymouth, UK
Am J Med Genet A 158:3159-67. 2012....
- Researcher and institutional review board chair perspectives on incidental findings in genomic researchJanet K Williams
College of Nursing, The University of Iowa, Iowa City, Iowa 52242, USA
Genet Test Mol Biomarkers 16:508-13. 2012..Genomic research can produce findings unrelated to a study's aims. The purpose of this study was to examine researcher and Institutional Review Board (IRB) chair perspectives on genomic incidental findings (GIFs)...
- Beliefs and attitudes towards participating in genetic research - a population based cross-sectional studySamantha M Kerath
Feinstein Institute for Medical Research, North Shore LongIsland Jewish Health System, 350 Community Drive, Great Neck, NY 11021, USA
BMC Public Health 13:114. 2013..To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a ..
- Quantitative genetic research on sleep: a review of normal sleep, sleep disturbances and associated emotional, behavioural, and health-related difficultiesNicola L Barclay
Northumbria Centre for Sleep Research, Department of Psychology, School of Life Sciences, Northumbria University, Newcastle upon Tyne, NE1 8ST, UK
Sleep Med Rev 17:29-40. 2013....
- Genomic sovereignty and the African promise: mining the African genome for the benefit of AfricaJantina de Vries
Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town 7925, South Africa
J Med Ethics 38:474-8. 2012..In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent...
- Patients' views on identifiability of samples and informed consent for genetic researchSara Chandros Hull
National Human Genome Research Institute, National Institutes of Health, Bethesda, MD 20892 1156, USA
Am J Bioeth 8:62-70. 2008..used to determine informed consent practices for the use of clinically derived samples for genetic research--is meaningful to patients...
- Epilepsy patient-participants and genetic research results as "answers"Emily E Namey
Duke Institute for Genome Sciences and Policy, Duke University, Durham, NC 27710, USa enamey gmail com
J Empir Res Hum Res Ethics 6:21-9. 2011..participating in a genetic study, we found that this population of research subjects anticipated that genetic research results would provide answers to a range of questions about the research process and their condition...
- The storage and use of biological tissue samples from minors for research: a focus group studyK Hens
Centre for Biomedical Ethics and Law, Katholieke Universiteit Leuven, Leuven, Belgium
Public Health Genomics 14:68-76. 2011b>Genetic research on pediatric stored tissue samples raises specific ethical questions that differ from those raised when adults are the donors. To investigate opinions on this matter, we conducted 10 focus group discussions...
- Great expectations: views of genetic research participants regarding current and future genetic studiesGail Henderson
Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina 27599 7240, USA
Genet Med 10:193-200. 2008Recruitment of prior participants in genetic research is one strategy suggested to maximize efficient use of research dollars in gene-environment studies...
- Next generation sequencing--implications for clinical practiceEleanor Raffan
Metabolic Research Laboratories, Institute of Metabolic Science, University of Cambridge, Box 289, Addenbrooke s Hospital, Cambridge CB2 0QQ, UK
Br Med Bull 99:53-71. 2011..Consequently, many patients with genetic syndromes remain without a specific diagnosis...
- Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitmentHolly K Tabor
Seattle Children s Research Institute University of Washington, Treuman Katz Center for Pediatric Bioethics, 1900 Ninth Ave, Seattle, WA 98101, USA
J Empir Res Hum Res Ethics 6:41-52. 2011As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results...
- The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepositoryErin D Harris
Department of Medicine, Division of Genetics and Program in Genomics, Children s Hospital Boston, Boston, Massachusetts, USA
Genet Med 14:330-7. 2012..The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned...
- Public and biobank participant attitudes toward genetic research participation and data sharingA A Lemke
Center for Genetic Medicine, Northwestern University, Chicago, Ill 60611, USA
Public Health Genomics 13:368-77. 2010..study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data...
- Thresholds and boundaries in the disclosure of individual genetic research resultsLynn G Dressler
Case Western Reserve University
Am J Bioeth 6:18-20; author reply W10-2. 2006
- Human subject protections in genetic researchM Justin Coffey
Pritzker School of Medicine, University of Chicago, Chicago, IL 60637
Genet Test 8:209-13. 2004..In this era of public scrutiny of medical research, we recommend greater familiarity with and documentation of all human subject protections...
- Just around the corner: rhetorics of progress and promise in genetic researchRobert Evans
Cardiff School of Social Sciences, UK
Public Underst Sci 18:43-59. 2009..The effect is a collaborative project in which the promise of a technical solution "just around the corner" is sustained whilst concerns about the future difficulties are marginalized...
- The meaning of genetic research results: reflections from individuals with and without a known genetic disorderR Jean Cadigan
Department of Social Medicine, University of North Carolina Chapel Hill, NC 27599 7240, USA
J Empir Res Hum Res Ethics 6:30-40. 2011....
- Ethical, legal and social issues in the context of the planning stages of the Southern African Human Genome ProgrammeJantina de Vries
Department of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
Med Law 31:119-52. 2012..This article will also consider the present legal framework governing genomic research in South Africa and will conclude with proposals regarding such a framework for the future...
- Patient perspectives on group benefits and harms in genetic researchA J Goldenberg
Department of Bioethics, Case Western Reserve University, Cleveland, Ohio, USA
Public Health Genomics 14:135-42. 2011It is unclear how the possible effects of genetic research on socially identifiable groups may impact patient willingness to donate biological samples for future genetic studies.
- Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experiencePaulina Tindana
The Ethox Centre, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford, OX3 7LF, United Kingdom
BMC Med Ethics 13:15. 2012..This study sought to identify issues arising in practice during the enrollment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study...
- The role of race and trust in tissue/blood donation for genetic researchJada Bussey-Jones
School of Medicine, Emory University, Atlanta, Georgia 30331, USA
Genet Med 12:116-21. 2010Public willingness to donate tissue samples is critical to genetic research. Prior work has linked minority status and mistrust with less willingness to provide specimens...
- Opinions and intentions of parents of an autistic child toward genetic research results: two typical profilesLaurence Baret
Department of Social and Preventive Medicine, Faculty of Medicine, Universite de Montreal, Montreal, QC, Canada
Eur J Hum Genet 19:1127-32. 2011..We explored the perspective of parents of an autistic child participating in genetic research. In all, 388 questionnaires were sent to 194 parents; 158 questionnaires were completed (89 mothers and 69 ..
- The future of genetic research on neurodegenerationChristine Van Broeckhoven
Neurodegenerative Brain Diseases Group, Department of Molecular Genetics, VIB, Antwerpen, Belgium
Nat Med 16:1215-7. 2010....
- Native Hawaiian preferences for informed consent and disclosure of results from genetic researchMegan Fong
Imi Hale Native Hawaiian Cancer Awareness, Research, and Training Network, Program of Papa Ola Lokahi, Honolulu, HI 96813, USA
J Cancer Educ 21:S47-52. 2006..Informed consent is generally waived when using anonymous stored specimens in research because individual harm is minimal; however, group harm may arise if specimens contain ethnic identifiers...
- Cultural issues in genetic research with American Indian and Alaskan Native peopleMalcolm B Bowekaty
Governor, A shiwi Zuni Indian Pueblo, USA
IRB 25:12-5. 2003
- Cultural challenges to biotechnology: Native American genetic resources and the concept of cultural harmRebecca Tsosie
Indian Legal Program at the Sandra Day O Connor College of Law, Arizona State University, USA
J Law Med Ethics 35:396-411. 2007This article examines the intercultural context of issues related to genetic research on Native peoples...
- GWASs and the age of human as the model organism for autoimmune genetic researchRobert Plenge
Brigham and Women s Hospital, Division of Rheumatology, Immunology and Allergy, Boston, MA 02115, USA
Genome Biol 11:212. 2010..Genetic studies have identified more than 150 autoimmune loci, and next-generation sequencing will identify more. Is it time to make human the model organism for autoimmune research?..
- Study of the involvement of research ethics committees in the constitution and use of biobanks in FranceGregoire Moutel
Laboratoire d éthique médicale, de droit de la santé et de santé publique et Institut International de Recherche en Ethique Biomédicale IIREB, Faculté de Médecine Paris Necker, Universite Paris, 5 René Descartes, Paris, France
Pharmacogenetics 14:195-8. 2004Concerns are emerging about the protection of individuals who take part in genetic research involving biobanks...
- Genetic research and biobanksDon Chalmers
Faculty of Law, University of Tasmania, Hobart, TAS, Australia
Methods Mol Biol 675:1-37. 2011Human biobanks, and genetic research databases, as referred to by the Organisation for Economic Co-operation and Development (OECD), are essential tools for modern biomedical research...
- Racial and ethnic differences in willingness to participate in psychiatric genetic researchEleanor J Murphy
Department of Psychiatry, Columbia University, New York State Psychiatric Institute, New York 10032, USA
Psychiatr Genet 19:186-94. 2009..This study was designed to understand some of the barriers to recruitment...
- Genetic research into Alzheimer's disease: a European focus group study on ethical issuesAnco van der Vorm
Department of Ethics, Philosophy and History of Medicine, Radboud University Nijmegen Medical Centre, The Netherlands
Int J Geriatr Psychiatry 23:11-5. 2008..The ethical implications of this kind of research are also attracting attention. However, relatively few open-ended qualitative studies have been carried out to study these aspects...
- When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research resultsFiona A Miller
Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada
BMC Med Ethics 9:4. 2008..Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm...
- Genomic research and data-mining technology: implications for personal privacy and informed consentHerman T Tavani
Department of Philosophy, Rivier College, Nashua, NH 03060, USA
Ethics Inf Technol 6:15-28. 2004....
- Ethical and practical challenges surrounding genetic and genomic research in developing countriesAceme Nyika
African Malaria Network Trust AMANET, Dar es Salaam, Tanzania
Acta Trop 112:S21-31. 2009The nature of some potential benefits and risks associated with genetic research is different from the types of potential benefits and risks associated with other types of health research such as clinical trials and biomedical research ..
- Genetics. Genomic research and human subject privacyZhen Lin
Department of Genetics, Stanford University School of Medicine, CA 94305 5120, USA
Science 305:183. 2004
- Is it ethical to deny genetic research participants individualised results?P Affleck
Leeds Institute of Molecular Medicine, St James s University Hospital, UK
J Med Ethics 35:209-13. 2009..genomel.org) and that has relevance to all genetic research in humans...
- Understanding incidental findings in the context of genetics and genomicsMildred K Cho
Department of Pediatrics at Stanford University, CA, USA
J Law Med Ethics 36:280-5, 212. 2008..findings or other findings of clinical significance that arise in the course of human genomic and genetic research. What research results should be offered, and what should not be offered? For which research should ..
- Population genomics and research ethics with socially identifable groupsJoan L McGregor
Bioethics, Policy, and Law Program at the School of Life Sciences and Philosophy, Arizona State University, USA
J Law Med Ethics 35:356-70. 2007..The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups.
- Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic researchK A Kaphingst
Center for Community Based Research, Dana Farber Cancer Institute, Boston, MA, USA
Clin Genet 69:393-8. 2006Although social and ethical issues related to the storage and use of biologic specimens for genetic research have been discussed extensively in the medical literature, few empiric data exist describing patients' views...
- Ethical issues in medical-sequencing research: implications of genotype-phenotype studies for individuals and populationsMorris W Foster
Department of Anthropology, University of Oklahoma, Norman, OK 73019, USA
Hum Mol Genet 15:R45-9. 2006..Those issues are reviewed, along with possible solutions to them...
- Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic researchBenjamin R Bates
School of Communication Studies, Lasher Hall, Ohio University, Athens, OH 45701, USA
Soc Sci Med 60:331-44. 2005This paper discusses how the American public accounts for the concerns that they have about genetic research and the benefits that they foresee...
- Ethical issues associated with conducting genetic family studies of complex diseaseNedal H Arar
Division of Nephrology Department of Medicine, University of Texas Health Science Center at San Antonio, San Antonio, TX 78229 3900, USA
Ann Epidemiol 15:712-9. 2005..To examine subjects' recognition of the risks and ethical issues associated with enrollment in genetic family studies (GFS) and explore how this recognition affects their informed and voluntary participation...
- Associations, populations, and the truth: recommendations for genetic association studies in Arthritis & RheumatismTom W J Huizinga
Leiden University Medical Center, Leiden, The Netherlands
Arthritis Rheum 50:2066-71. 2004
- The debate over research on stored biological samples: what do sources think?Dave Wendler
Department of Clinical Bioethics, Warren G Magnuson Clinical Center, National Institutes of Health, Bethesda, MD 20892, USA
Arch Intern Med 162:1457-62. 2002..The debate over informed consent for research on stored biological samples has enormous scientific implications. Unfortunately, there are no data on individuals' attitudes regarding when their consent should be obtained for such research...
- Research on stored biological samples is still researchRobert M Sade
Arch Intern Med 162:1439-40. 2002
- Offering individual genetic research results: context mattersLaura M Beskow
Center for Genome Ethics, Law and Policy, Duke Institute for Genome Sciences and Policy, Durham, NC 27708, USA
Sci Transl Med 2:38cm20. 2010The disclosure of individual genetic research results to study participants continues to be the subject of vigorous debate, centered primarily on the nature of the results...
- Informed consent for population-based research involving geneticsL M Beskow
Office of Genetics and Disease Prevention, Centers for Disease Control and Prevention, 4770 Buford Hwy NE, MS K 28, Atlanta, GA 30341 3724, USA
JAMA 286:2315-21. 2001....
- Genetic research involving human biological materials: a need to tailor current consent formsSara Chandros Hull
Social and Behavioral Research Branch, National Human Genome Research Institute, NIH, Bethesda, MD, USA
IRB 26:1-7. 2004
- The ethics of characterizing difference: guiding principles on using racial categories in human geneticsSandra Soo Jin Lee
Genome Biol 9:404. 2008..We are a multidisciplinary group of Stanford faculty who propose ten principles to guide the use of racial and ethnic categories when characterizing group differences in research into human genetic variation...
- Using Third-Party Data in Pedigree and Subgroup AnalysesMORRIS FOSTER; Fiscal Year: 2005..of resolving the imperfect fit between biological relatedness and social identity, at least in the case of genetic research and medicine, is to develop approaches for rigorously specifying social identity (i.e...
- AFRICAN AMERICAN COMMUNITY REVIEW OF GENETIC RESEARCHMORRIS FOSTER; Fiscal Year: 2005..We anticipate that different levels of community review will be applicable to different kinds of local and nested communities. ..
- African-American Haplotype Map Engagement and Follow-upMORRIS FOSTER; Fiscal Year: 2004..abstract_text> ..
- EVALUATING USE OF GENETIC INFORMATION: A MODEL PROCESSWylie Burke; Fiscal Year: 2003..5. To conduct an evaluation of the model process within a large health care system. ..
- The ethics of consent for the public release of potentially identifiable DNA dataAmy McGuire; Fiscal Year: 2009..a consent process that will encourage data sharing while building public trust and fostering participation in genetic research. This project builds on a preliminary study of participants'attitudes toward DNA data release and has ..
- Exploring Attitudes About Data Disclosure and Data-Sharing in Genomics ResearchSusanne Haga; Fiscal Year: 2008..The success of large-scale genomics research initiatives will depend on the support and participation of the public and therefore, their views are critically important to obtain. [unreadable] [unreadable] [unreadable]..
- NURSING CDROM ON ETHICAL ISSUES OF GENETIC TESTINGJanet Williams; Fiscal Year: 2002..Increased knowledge of ethical aspects of genetic testing will enable professional nurses to incorporate this knowledge into their professional nursing roles. ..
- Family Health After Predictive HD TestingJanet Williams; Fiscal Year: 2004..This study will document the health care needs of family members of persons who receive a positive result from presymptomatic gene testing for an inherited degenerative neurologic disease. ..
- BEYOND STIGMA--INTERPRETING GENETIC DIFFERENCEPamela Sankar; Fiscal Year: 2003..abstract_text> ..
- Smoking Cessation for Head and Neck Cancer PatientsRobert Schnoll; Fiscal Year: 2006..In turn, our findings may help guide the implementation of smoking cessation treatments for all cancer patients within Comprehensive Cancer Centers in the US. ..
- Cultural and Ethical Issues in Genetic Family StudiesNedal Arar; Fiscal Year: 2002..2) recruiters' perspective on family enrollment. (3) association of participants' responses with demographic characteristics. (4) ethnic differences in attitudes towards participation in GFS. ..
- Advancing the Race Dialog: Genes, Forensics & MedicinePamela Sankar; Fiscal Year: 2006..Our primary aim is to clarify how and why researchers use race and ethnicity in forensic and medical genetic research, and what researchers think are appropriate generalizations and applications of their findings...
- EMERGING ISSUES IN CRIMINAL FORENSIC GENETICSPAMELA L SANKAR; Fiscal Year: 2010..and effective application of FDP to criminal forensics while maintaining the integrity of contemporary genetic research and continuing to foster public trust in genetic research...
- Moral Distress and Suffering of Genetics ProfessionalsGail Geller; Fiscal Year: 2007..Such an intervention would be aimed at renewing commitment to the profession and improving patient care. [unreadable] [unreadable] [unreadable]..
- Molecular Epidemiology of Alcoholism 2- Big SibshipsAndrew Heath; Fiscal Year: 2007..abstract_text> ..
- Deep Brain Stimulation for Disorders of Mood Thought and Behavior: Scientific anDEBRA MATHEWS; Fiscal Year: 2007..unreadable] [unreadable] [unreadable]..
- Ethical and Social Issues in the Study of Genetics of Complex TraitsHOLLY TABOR; Fiscal Year: 2007..unreadable] [unreadable] [unreadable] [unreadable]..
- Learning About Research in North Carolina (LeARN)Giselle Corbie Smith; Fiscal Year: 2006..studies because of distrust and concerns about the motives of researchers, themes that may be amplified in genetic research. The proposed study, Project LeARN (Learning About Research in North Carolina), will build on a series of ..
- Genetic Determinants of Bipolar DisorderJordan Smoller; Fiscal Year: 2007..An important dividend of this large study will be the expansion of the repository to include DNA data on relatives and on an independent sample of controls, thus facilitating future genetic studies. ..
- NORTHWEST CANCER GENETICS NETWORKDeborah Bowen; Fiscal Year: 2006..This mix of disciplines is essential to support the infrastructure required to collect crucial data on individuals seeking genetic testing, as well as those with known family histories. ..
- Comparative Biology of p53, Checkpoint and LongevityGordon Lithgow; Fiscal Year: 2007..As these factors appear to affect aging in both simple invertebrates and mammals, we expect to define broad mechanisms by which cellular and organismal aging are co-regulated. ..
- Molecular Epidemiology of Inattentive ADHDRICHARD TODD; Fiscal Year: 2008..We note that this affected sib-pair sample would also be ideal to conduct more focused studies of neuroimaging, neuropsychological performance, and neurophysiological functioning in future studies. ..
- Genetic Factors Influencing Warfarin DoseMark Rieder; Fiscal Year: 2008..The long-term aim of this proposal is to account for 100% of the inter-individual variability in warfarin dosing. ..
- Ethics and Safeguards in Psychiatric ResearchLaura W Roberts; Fiscal Year: 2010DESCRIPTION (provided by applicant): Psychiatric genetic research (PGR) holds great promise for preventing, understanding, and treating neuropsychiatric disorders - a source of immense societal burden and personal suffering...
- The international 1q type 2 diabetes consortiumMARK IAN MCCARTHY; Fiscal Year: 2010..This information will contribute to future diagnostic and therapeutic advances in the clinical management of this condition. ..
- Prevention of Weight Gain in Young AdultsMark Espeland; Fiscal Year: 2009..This approach shows promise for reducing weight gain and thereby improving long-term cardiovascular health. (End of Abstract) ..
- Healthy Environments Partnership: Lean & Green in MotownAmy Schulz; Fiscal Year: 2009....
- Increasing Access to HIV Trials for Rural MinoritiesGiselle Corbie Smith; Fiscal Year: 2009..In Phase 3 we will conduct a single site, 12 month assessment of the individual enrollment session and mobile unit alone and in combination using a 3 arm experimental design. ..
- African American Participation in Cancer Genetics ResearchChanita Hughes Halbert; Fiscal Year: 2009..This study will provide empirical data that can be used to develop more effective strategies for recruiting African Americans to participate in cancer genetics research that enhance decisions about study participation. ..
- Government Industry Relationships in ScienceEric Campbell; Fiscal Year: 2008..unreadable] [unreadable] [unreadable]..
- Epigenetic Variation and its Determinants in DepressionJames Potash; Fiscal Year: 2008..Results from the novel studies proposed in this application should shed light on the epigenetic mechanisms and gene-environment interactions that result in vulnerability to depression. ..
- Genetic Deafness in the Alumni of Gallaudet UniversityKathleen Arnos; Fiscal Year: 2008..unreadable] [unreadable]..
- GPing: Informatics for Personal Control of Genomic DataIsaac S Kohane; Fiscal Year: 2010..3: Design and evaluate a user interface to communicate disclosure. In concert with appropriate non-discrimination legislation, G-PING lays the groundwork for large-scale genomic cohort studies. ..
- Mapping HIV/AIDS genes with haplotype-based strategiesRobert Plenge; Fiscal Year: 2008..These studies hope to identify novel genes that influence susceptibility to HIV/AIDS, thereby providing insight into HIV/AIDS pathogenesis and, ultimately, improving patient care. ..
- CONCEPTS OF RACE & ETHNICITY IN GENETICS RESEARCHLinda Hunt; Fiscal Year: 2005..In addition to studying research ethics, in order to assure an adequate knowledge base to conduct studies on genetic research, Dr. Hunt will also complete some courses and readings in medical genetics and statistics. Dr...
- Index and Retrieval of Pathology SpecimensIsaac Kohane; Fiscal Year: 2005..abstract_text> ..
- Genetic Predictors of Incident CVDSharon Kardia; Fiscal Year: 2005During the past two decades, genetic research in cardiovascular disease (CVD), as well as other common chronic diseases, has been dominated by single gene linkage and association studies focused on understanding of the genetics of ..
- Mutation Screening of ADHDRICHARD TODD; Fiscal Year: 2005..The presence of allelic variation identified using DHPLC will be confirmed by genomic DNA sequencing. Whether specific alleles are associated with subtypes of ADHD will be tested using the Transmission Disequilibrium Test (TDT). ..
- MHC Loci in the Control of Marek's LymphomaMARCIA MILLER; Fiscal Year: 2005..abstract_text> ..
- C. elegans, Aging and High Throughput Screening (RMI)Gordon Lithgow; Fiscal Year: 2004..elegans for HTS. Our longer term goal is to undertake HTS for compounds that protect against oxidative stress, extend lifespan and translate into mammalian models of age-related diseases such as Alzheimer's and Parkinson's. ..
- NEWBORN GENETIC SCREENING:FOR WHOSE BENEFIT?Lainie Ross; Fiscal Year: 2005..OUTCOMES: The major outcomes will be a series of peer-reviewed articles and a full-length book entitled Newborn Genetic Screening: In whose Interest? For whose Benefit? ..
- Diaphragm Fatigue:Mechanisms of Treatment by DopamineJanet Pierce; Fiscal Year: 2004..Data obtained from this research will advance our understanding of biological systems, and thus provide data to support clinical trials using dopamine to prevent and treat DF. ..
- National Black Leadership Conference on GeneticsKathy Hudson; Fiscal Year: 2004..The Conference will be held in Washington DC in May 2004. ..
- Psychoneuroimmunology and Cervical CancerLari Wenzel; Fiscal Year: 2004..All patients will be identified through the Cancer Surveillance Program of Orange, Imperial and San Diego Counties (CSPOC/SanDIOC). ..
- SOCIAL AND PHYSICAL ENVIRONMENTS AND HEALTH DISPARITIESAmy Schulz; Fiscal Year: 2004....
- Weight Gain in African American Breast Cancer SurvivorsChanita Hughes Halbert; Fiscal Year: 2005..abstract_text> ..
- Supporting Decisions In Inherited Cancer SusceptibilityMary Ropka; Fiscal Year: 2006....
- MOLECULAR MECHANISMS OF HUMAN BLADDER CARCINOGENESISPeter Jones; Fiscal Year: 2006..The participating investigators have a considerable history of collaboration in the areas of translational research in the field of bladder cancer and these interactions will be formalized and enhanced by this Program Project Grant. ..
- Linkage Disequilibrium: mapping and positional cloningNewton Morton; Fiscal Year: 2006..abstract_text> ..
- PSYCHIATRIC RESEARCH ETHICS: SCIENCE AND SAFEGUARDSLaura Roberts; Fiscal Year: 2002..Through the plan for development of my research career, I hope to contribute to the advancement of vital, ethically sound research involving mentally ill people and members of other special and potentially vulnerable, populations. ..
- GENETIC DETERMINANTS OF HIGH BP IN THREE RACIAL GROUPSSharon Kardia; Fiscal Year: 2004..The resulting synthesis of ideas and amassed data permits rigorous hypothesis testing not otherwise possible and will hasten understanding of the previously elusive genetic variation responsible for disease risk. ..
- INFRASTRUCTURE TO FACILITATE DISCOVERY OF AUTISM GENESJoachim Hallmayer; Fiscal Year: 2006..abstract_text> ..
- HRT Decision Making in the Post-WHI EraKatherine Newton; Fiscal Year: 2006..This study will provide key information about HRT decision making, and experiences with HRT discontinuation, in an era of increased scientific clarity about HRT's risks and benefits. [unreadable] [unreadable]..
- DNA repair, genetic variation and skin cancerDavid Hunter; Fiscal Year: 2003..This study will be among the first studies of the association of polymorphisms in candidate DNA repair genes with skin cancer, which assess potential interactions between genotype and sunlight exposure. ..
- Race and Public Communication about Human VariationCeleste Condit; Fiscal Year: 2003..The project will focus on the concerns of African Americans about discrimination and genetics and on attitudes about African Americans and genetics held by European Americans and the general population. ..
- Candidate Genes for Smoking In Related and Unrelated IndividualsOvide Pomerleau; Fiscal Year: 2007..abstract not provided ..
- Engaging African Communities for the HapMap ProjectCharles Rotimi; Fiscal Year: 2007..abstract_text> ..
- Academic Industry Relationships in GeneticsEric Campbell; Fiscal Year: 2006..Results will be disseminated through publications in peer-reviewed journals and presentations at scientific meetings. ..
- Multi-Dimensional Cultural ValuesChanita Hughes Halbert; Fiscal Year: 2009..This study will provide a psychometrically sound instrument that can be used in clinical and research settings to provide culturally sensitive care and interventions to ethnically and racially diverse populations. ..
- Effects of family smoking history in never-smokersOvide Pomerleau; Fiscal Year: 2006....
- Indian and Hindu Perspectives on Genetic VariationJohn Belmont; Fiscal Year: 2006..will engage members of Indian communities in the Houston metropolitan area to elicit their perspectives on genetic research and the International HapMap Project...
- Folate, 1-Carbon Nutrients, Gene Variants & Colon CancerDavid Hunter; Fiscal Year: 2008..These highly interrelated studies will help integrate epidemiologic and mechanistic observations and help provide a basis for public health recommendations on optimal levels of folate and B vitamin intake. ..
- Mitochondrial Genetics of Recovery After Brain InjuryYvette Conley; Fiscal Year: 2008....
- Lifespan determination and stress response in C. elegansGordon Lithgow; Fiscal Year: 2006..Thirdly, we will identify and manipulate the levels of endocrine signals that act downstream of the insulin/IGF signaling pathway to limit lifespan. ..
- STUDIES OF GENOMIC IMPRINTING IN BIPOLAR DISORDERJames Potash; Fiscal Year: 2005....
- DOUCHING, VAGINAL MICROBIOLOGY, AND PIDRoberta Ness; Fiscal Year: 2003..Given the paucity of information regarding the relationship between douching and reproductive outcomes, the proposed study is imperative in order to direct future public health recommendations. ..