Subjects matter: a survey of public opinions about a large genetic cohort study
Genetics in MedicinePublished 1 November 2008
David Kaufman, Juli Murphy, Joan Scott, Kathy Hudson
Citations203
SJR quartileQ1
SJR score2.68
SNIP2.38
Generate an AI Snapshot to get a quick, structured summary of this paper.
Study Snapshot
ObjectiveStudy objective
MethodsResearch methodology
PopulationPopulation studied
Sample sizeSample sizes
OutcomesStudy outcomes here
ResultsStudy results comes here
LimitationsResearch study limitations comes here
A concise AI-generated summary of the paper will appear here once you click Generate AI Snapshot.
TL;DR
Widespread support exists in the general public for a large national cohort study and providing individual research results is a strong motivation to participate; compensating participants $200 may increase participation a similar amount.
Abstract
Widespread support exists in the general public for a large national cohort study. Providing individual research results is a strong motivation to participate; compensating participants $200 may increase participation a similar amount. Incentives, recruitment, and return of results could be tailored to demographics groups' interests.
Keywords
Social SciencesMedicineBiochemistry, Genetics and Molecular Biology
Clinical Pharmacology & TherapeuticsDevelopment of a Large-Scale De-Identified DNA Biobank to Enable Personalized Medicine
1,003 Citations2008DM Roden, JM Pulley +5 more
A “opt‐out” model was implemented after significant review and revision to develop a DNA biobank linked to phenotypic data derived from an electronic medical record (EMR) system.
American Journal of EpidemiologyThe Third Generation Cohort of the National Heart, Lung, and Blood Institute's Framingham Heart Study: Design, Recruitment, and Initial Examination
863 Citations2007Greta Lee Splansky, David P. Corey +12 more
The comparison of Third Generation Cohort data with measures previously collected from the first two generations will facilitate investigations of genetic and environmental risk factors for subclinical and overt diseases, with a focus on cardiovascular and lung disorders.
Nature Reviews GeneticsGenes, environment and the value of prospective cohort studies
317 Citations2006Teri A. Manolio, Joan E. Bailey‐Wilson +1 more
The prospective cohort design provides a valuable complement to case-control studies in characterizing exposures and risk factors before disease onset, which reduces important biases that are common in case–control studies.
European Journal of Public HealthGenetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?
235 Citations2005Åsa Kettis-Lindblad, Lena Ring +2 more
The majority of the general public is willing to donate a sample to a biobank, and depends on the public being well-informed and having trust in experts and institutions, and mainly driven by altruism.
American Journal of EpidemiologyGenetic and Environmental Contributions to Cardiovascular Disease Risk in American Indians: The Strong Heart Family Study
227 Citations2003Kari E. North
The results suggest that heredity explains a substantial proportion of the variability of CVD risk factors and that these heritabilities are large enough to warrant a search for major risk factor genes.
Scandinavian Journal of Public HealthInformed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research
203 Citations2004Klaus Hoeyer, Bert‐Ove Olofsson +2 more
Though genetic research in bioethical debate is often viewed as a potential threat to the integrity of the donor, the confidentiality of medical records still seems to concern donors more.
Archives of Internal MedicineEmpirical Assessment of Whether Moderate Payments Are Undue or Unjust Inducements for Participation in Clinical Trials
192 Citations2004Scott D. Halpern, Jason Karlawish +3 more
Although higher payment motivates research participation, it is found that commonly used payment levels represent undue or unjust inducements, and increasing payments do not alter peoples' perceptions of risk.
Archives of Internal MedicineThe Debate Over Research on Stored Biological Samples
174 Citations2002Dave Wendler, Ezekiel J. Emanuel
Genetics in MedicineConsent for genetic research in a general population: The NHANES experience
149 Citations2003Geraldine M. McQuillan, Kathryn S Porter +2 more
Although non-Hispanic black individuals have overall response rates similar to those of the other racial/ethnic groups, they are less likely to agree to have a blood sample saved for future genetic research, and these findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future Genetic research across many demographic variables.
Public Health GenomicsPublic Attitudes regarding the Donation and Storage of Blood Specimens for Genetic Research
118 Citations2001Sophia Wang, Fred Fridinger +2 more
Understanding the various factors contributing to knowledge, attitudes and behavior regarding the donation and storage of blood specimens for genetic research will contribute to future actions in communicating genetic research goals to the public and recruitment for population-based genetic studies.
Clinical Chemistry and Laboratory Medicine (CCLM)Population Genomics: Laying the Groundwork for Genetic Disease Modeling and Targeting
115 Citations1998Jeff Gulcher, Kari Stefansson
Basing the company in Iceland directly benefits the population in terms of employment and return on investment as well as providing the health care system with an information resource which may be used in preventive medicine and in the optimization of health care in Iceland.
The LancetOffering participants results of a clinical trial: sharing results of a negative study
107 Citations2005Ann H. Partridge, Julia S. Wong +7 more
Most participants reported positive feelings about being offered results and about clinical trials in general, and preliminary findings from sharing clinical trial results are encouraging.
Public Health GenomicsCommunity Engagement in Genetic Research: Results of the First Public Consultation for the Quebec CARTaGENE Project
101 Citations2007Béatrice Godard, Jennifer Marshall +1 more
The first public consultation for the creation of a large-scale genetic database, the Quebec CARTaGENE project, is presented in order to gauge whether the general public is receptive to the project.
Archives of Internal MedicineResearch With Stored Biological Samples
99 Citations2005Donna T. Chen, Donald L. Rosenstein +5 more
It is suggested that providing research participants with a simple binary choice to authorize or refuse all future research might allow individuals to control use of their samples, simplify consent forms, and allow important research to proceed.
Cell and Tissue BankingAttitudes and perceptions of patients towards methods of establishing a DNA biobank
95 Citations2007Jill M. Pulley, Margaret Brace +2 more
These data indicate general acceptance among respondents, but a subset of the population would be opposed to the DNA program, which reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample.
The Journal of Law Medicine & EthicsInformed Consent and Biobanks
93 Citations2005Ellen Wright Clayton
In the research setting, it is now easy to abstract information from electronic medical records, and computers make it possible to analyze enormous datasets and have contributed in essential ways to the dramatic increases in the authors' understanding of genomics and other areas of biomedical science.
JAMAImproving Informed Consent and Enhancing Recruitment for Research by Understanding Economic Behavior
93 Citations2005Laura B. Dunn
It is argued that individuals will participate in research if they think the benefit of doing so is greater than the cost, and that external validity, an important ethical dimension that depends on adequate and representative samples, will be limited unless compensation is recognized for what it is: a factor in real-world decision making.
JAMAImplications of Disclosing Individual Results of Clinical Research
93 Citations2006Ellen Wright Clayton, Lainie Friedman Ross
Public Health GenomicsInformed Consent and Subject Motivation to Participate in a Large, Population-Based Genomics Study: The Marshfield Clinic Personalized Medicine Research Project
88 Citations2006Catherine A. McCarty, Anuradha Nair +2 more
Future community consultation efforts should highlight areas of lower understanding in the PMRP and research coordinators may need to take more time informing males and older individuals about project details so that they are making truly informed decisions about study participation.
American Heart JournalHypertensive patients' willingness to participate in placebo-controlled trials: implications for recruitment efficiency
87 Citations2003Scott D. Halpern, Jason Karlawish +4 more
Hypertensive patients participate in trials for altruistic and personal health reasons, and differences between patients who do or do not participate may influence trial outcomes.
Clinical GeneticsWillingness to donate blood samples for genetic research: a survey from a community in Singapore
82 Citations2003Ma‐Li Wong, KS Chia +3 more
Genetics in MedicineConsent for genetic research in a general population: An update on the National Health and Nutrition Examination Survey experience
78 Citations2006Geraldine M. McQuillan, Qiyuan Pan +1 more
Findings demonstrate wide acceptance among survey participants for allowing storage of specimens for future studies but indicate the need to explore race/gender issues with the collection and storage of DNA for genetic research.
Cancer Epidemiology Biomarkers & PreventionRacial Differences in Enrolment in a Cancer Genetics Registry
78 Citations2004Patricia G. Moorman, Celette Sugg Skinner +8 more
African American women were less likely to enroll in the cancer genetics registry than White women, and race was the only significant predictor of enrolment in multivariable models.
American Journal of Medical Genetics Part C Seminars in Medical GeneticsEthical implications of including children in a large biobank for genetic‐epidemiologic research: A qualitative study of public opinion
76 Citations2008David Kaufman, Gail Geller +4 more
A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children, to address children's changing capabilities and rights as they grow and reach the age of consent.
JNCI Journal of the National Cancer InstituteHigh Rate of Consent to Bank Biologic Samples for Future Research: The Eastern Cooperative Oncology Group Experience
73 Citations2002Terry Malone
The results show that increased patient protection does not result in decreased availability of biologic samples for future research purposes and possible factors predicting patient refusal are identified.
Journal of Clinical PathologyA study of public opinion on the use of tissue samples from living subjects for clinical research
73 Citations2004M.L. Goodson, Bryan Vernon
Greater research attention needs to be given to public opinion on the use of tissue from living subjects for medical research to facilitate drafting of new legislation.
Pediatric Blood & CancerThe return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer
71 Citations2006Conrad V. Fernandez, Darcy A. Santor +6 more
The needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results are examined.
NatureFair payment or undue inducement?
70 Citations2006Insoo Hyun
Women who donate their eggs for stem-cell research should be compensated in the same way as other healthy research volunteers, argues Insoo Hyun.
NatureMerging and emerging cohorts: Necessary but not sufficient
70 Citations2007Francis S. Collins, Teri A. Manolio
Commentary contributions show that long-term health studies of many thousands of individuals are under way in several countries in Europe and Asia, with a view to determining the influence of genes and environment on disease.
Controlled Clinical TrialsProspective preference assessment
66 Citations2002Scott D. Halpern
It is concluded that PPA is a feasible approach to a more democratic and efficient research process and that its adoption would be consistent with current trends in health care.
Clinical GeneticsViews of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research
60 Citations2006KA Kaphingst, JM Janoff +2 more
The views of 26 female breast cancer patients who had consented to donate blood or tissue samples for breast cancer research were explored, examining the range of participants' views regarding the storage and use of biologic samples.
Journal of General Internal MedicineAttitudes of urban American Indians and alaska natives regarding participation in research
59 Citations2006Dedra Buchwald, Veronica Mendoza-Jenkins +4 more
Close attention to study type, institutional sponsorship, community involvement, potential risks and benefits, and topic are essential to conceptualizing, designing, and implementing successful health research with American Indian and Alaska Native populations.
International Journal of Circumpolar HealthA genetic and epidemiologic study of cardiovascular disease in Alaska natives (GOCADAN): design and methods
54 Citations2005Barbara V. Howard, Richard D. Devereux +21 more
This study will generate a genome-wide scan for loci influencing cardiovascular disease-related traits and will provide data on CVD prevalence, risk factors and the relative contribution of genetic and environmental determinants in Alaska Native peoples.
American Journal of Medical Genetics Part AEmpirical data about women's attitudes towards a hypothetical pediatric biobank
53 Citations2008Alon B. Neidich, Joshua W. Joseph +2 more
Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobanks and about a hypothetical pediatric biobank and found that most women support biobanking development for research purposes.
Genetics in MedicineGreat expectations: views of genetic research participants regarding current and future genetic studies
50 Citations2008Gail E. Henderson, Joanne M. Garrett +4 more
Despite very positive attitudes of these participants toward genetic research, there is significant variation based on participant characteristics, which should encourage and caution researchers attempting to recruit prior participants into genetic studies.
Contemporary Clinical TrialsAn assessment of willingness to participate in a randomized trial of arthroscopic knee surgery in patients with osteoarthritis
49 Citations2005Alisha H. Creel, Elena Losina +8 more
Since OA affects females disproportionately, a better understanding of barriers to females' participation in trials may enhance future research on treatment of osteoarthritis.
Journal of Medical EthicsAttitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey
46 Citations2007S. Danielle MacNeil, Conrad V. Fernandez
University-based REB chairs overwhelmingly support the offer of research results to participants, incongruent with the frequent lack of existing REB guidelines recommending this practice.
JAMASubject to Payment?
43 Citations1997Glenn McGee
Fifty years after the world's conversation at Nuremberg about medical research abuses, Jean, a 20-year-old college senior, sits in the office of the clinical director of her university's egg donation program and decides to take the money offered, sign on, and enroll as an egg donor in a small infertility protocol.
Cancer Epidemiology Biomarkers & PreventionIntentions to Participate in Genetics Research among African American Smokers
38 Citations2006Chanita Hughes Halbert, Oscar H. Gandy +2 more
Recruitment messages and protocols that address the benefits of research participation, as well as concerns about the limitations and risks of genetic testing, may enhance African American participation in research on genetics and smoking.