26 results match your criteria AJOB primary research[Journal]

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Focusing on Cause or Cure?: Priorities and Stakeholder Presence in Childhood Psychiatry Research.

AJOB Prim Res 2014 Jan;5(1):44-55

Center for the Integration of Research on Genetics and Ethics (CIRGE), Stanford Center for Biomedical Ethics, Stanford University, 1215 Welch Road, Modular A, Stanford, CA 94305, Tel: (650) 725-7993,

Background: Biomedical research is influenced by many factors, including the involvement of stakeholder groups invested in research outcomes. Stakeholder involvement in research efforts raise questions of justice as their specific interests and motivations play a role in directing research resources that ultimately produce knowledge shaping how different conditions (and affected individuals) are understood and treated by society. This issue is highly relevant to child psychiatry research where diagnostic criteria and treatment strategies are often controversial. Read More

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http://dx.doi.org/10.1080/21507716.2013.811315DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3979560PMC
January 2014
2 Reads

Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

AJOB Prim Res 2014 Jan;5(1):12-22

Duke University Medical Center, Durham, NC, USA.

Background: Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms.

Methods: To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description.

Results: Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. Read More

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http://dx.doi.org/10.1080/21507716.2013.813596DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927918PMC
January 2014
4 Reads

Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit.

AJOB Prim Res 2013 Oct;4(4):55-63

Stanford Center for Biomedical Ethics, Stanford University, 1215 Welch Road, Modular A, Stanford, CA, USA 94305-5417.

Background: In 2003, Havasupai tribe members in Arizona discovered that their DNA samples, collected for genetic studies on Type II diabetes, had been used for studies on schizophrenia, migration, and inbreeding without their approval. The resulting lawsuit brought by the Havasupai reached a settlement in April 2010 in which tribe members received monetary compensation and the return of DNA samples. In this study, we examine the perceptions of Institutional Review Board (IRB) chairpersons and human genetic researchers about the case and its impact on the practice of research. Read More

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http://dx.doi.org/10.1080/21507716.2013.770104DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3786163PMC
October 2013

Behavioral Science Research Informs Bioethical Issues in the Conduct of Large-Scale Studies of Children's Disease Risk.

AJOB Prim Res 2013 Jan;4(3):4-14

Associate Professor, Director of Behavioral Prevention Research, Division of Population Sciences, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street, NW, Suite 4100 Washington, DC 20007, USA.

Background: Birth cohort studies of the natural history of pediatric common disease risk raise many bioethical issues, including re-consenting participants over time as children mature and cohort retention. Understanding participants' study-specific knowledge, attitudes, beliefs, and behavior may offer insights into these issues from a psychological perspective.

Methods: We conducted an analysis of factors associated with parent-child communication about minor children's participation in a population-based birth cohort; children's knowledge about their own participation; and parental willingness to be re-contacted for future study among Swedish parents ( = 3,605) of children originally enrolled at birth in a prospective study of type 1 diabetes risk. Read More

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http://dx.doi.org/10.1080/21507716.2013.806968DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3747010PMC
January 2013
12 Reads

Empirically-derived Knowledge on Adolescent Assent to Pediatric Biomedical Research.

AJOB Prim Res 2013 ;4(3):15-26

Department of Psychology, University of Massachusetts Amherst, 610 Tobin Hall, 135 Hicks Way, Amherst, MA 01003.

Background: There has been a recent growth in empirical research on assent with pediatric populations, due in part, to the demand for increased participation of this population in biomedical research. Despite methodological limitations, studies of adolescent capacities to assent have advanced and identified a number of salient psychological and social variables that are key to understanding assent.

Methods: The authors review a subsection of the empirical literature on adolescent assent focusing primarily on asthma and cancer therapeutic research; adolescent competencies to assent to these studies; perceptions of protocol risk and benefit; the affects of various social context variables on adolescent research participation decision making; and the inter-relatedness of these psychological and social factors. Read More

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http://dx.doi.org/10.1080/21507716.2013.806967DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3728675PMC
January 2013
5 Reads

Factors that Affect Integrity of Authorship of Scientific Meeting Abstracts.

AJOB Prim Res 2013 ;4(2):15-22

Department of Communication, University of Cincinnati ; Center for Clinical and Translational Science & Training, University of Cincinnati.

Background: Strict criteria for manuscript authorship exist to guide decisions on who should be considered an author. Less is known about how authorship for scientific meetings is determined. Our goal was to explore factors that influence decisions about authorship of conference abstracts. Read More

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http://dx.doi.org/10.1080/21507716.2012.757259DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3682817PMC
January 2013
5 Reads

Views of IRBs Concerning their Local Ecologies: Perceptions of Relationships, Systems, and Tensions between IRBs and their Institutions.

Authors:
Robert Klitzman

AJOB Prim Res 2013 Jan;4(2):31-43

Columbia University.

Background: Research has generally examined institutional review boards (IRBs) in isolation, but critical questions arise of how these entities fit into the larger institutional contexts in which they operate and what the implications may be.

Methods: Semi-structured interviews were conducted with leaders of IRBs from among the top 240 institutions receiving funding from the National Institutes of Health.

Results: Interviewees felt that institutions may affect IRBs through both broad, indirect features (e. Read More

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http://dx.doi.org/10.1080/21507716.2012.757255DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3670805PMC
January 2013
4 Reads

Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

AJOB Prim Res 2012 Jul 19;3(3):3-11. Epub 2012 Jun 19.

University of Washington.

Background: To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared.

Methods: We conducted focus groups with 45 members of a Seattle-based integrated healthcare delivery system to learn about their views and expectations for informed consent in genome-scale studies.

Results: Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. Read More

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http://dx.doi.org/10.1080/21507716.2012.662575DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3593675PMC

Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line.

AJOB Prim Res 2013 22;4(3):27-38. Epub 2013 Jul 22.

Fordham University.

Background: The role of front-line researchers, those whose responsibilities include face-to-face contact with participants, is critical to ensuring the responsible conduct of community-based drug use research. To date, there has been little empirical examination of how front-line researchers perceive the effectiveness of ethical procedures in their real-world application and the moral stress they may experience when adherence to scientific procedures appears to conflict with participant protections.

Methods: This study represents a first step in applying psychological science to examine the work-related attitudes, ethics climate, and moral dilemmas experienced by a national sample of 275 front-line staff members whose responsibilities include face-to-face interaction with participants in community-based drug-use research. Read More

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http://dx.doi.org/10.1080/21507716.2013.806969DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5082423PMC
July 2013
5 Reads
3 Citations

Understanding the Severity of Wrongdoing in Health Care Delivery and Research: Lessons Learned From a Historiometric Study of 100 Cases.

AJOB Prim Res 2013;4(3):39-48. Epub 2013 Jul 22.

Saint Louis University.

Background: Wrongdoing among physicians and researchers causes myriad problems for patients and research participants. While many articles have been published on professional wrongdoing, our literature review found no studies that examined the rich contextual details of large sets of historical cases of wrongdoing.

Methods: We examined 100 cases of wrongdoing in healthcare delivery and research using historiometric methods, which involve the statistical description and analysis of coded historical narratives. Read More

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http://dx.doi.org/10.1080/21507716.2013.807892DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4626637PMC
July 2013
4 Reads

Parental Perspectives on a Pediatric Human Non-Subjects Biobank.

AJOB Prim Res 2012 Jan 19;3(3):21-29. Epub 2012 Jun 19.

Vanderbilt University.

BACKGROUND: Genomic biorepositories will be important tools to help unravel the effect of common genetic variants on risk for common pediatric diseases. Our objective was to explore how parents would respond to the inclusion of children in an opt-out model biobank. METHODS: We conducted semi-structured interviews with parents in hospital-based pediatric clinics. Read More

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http://dx.doi.org/10.1080/21507716.2012.662576DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501745PMC
January 2012
1 Read

Funding and Forums for ELSI Research: Who (or What) is Setting the Agenda?

AJOB Prim Res 2012 Jan 19;3(3):51-60. Epub 2012 Jun 19.

Occidental College.

BACKGROUND: Discussion of the influence of money on bioethics research seems particularly salient in the context of research on the ethical, legal and social implications (ELSI) of human genomics, as this research may be financially supported by the ELSI Research Program. Empirical evidence regarding the funding of ELSI research and where such research is disseminated, in relation to the specific topics of the research and methods used, can help to further discussions regarding the appropriate influence of specific institutions and institutional contexts on ELSI and other bioethics research agendas. METHODS: We reviewed 642 ELSI publications (appearing between 2003-2008) for reported sources of funding, forum for dissemination, empirical and non-empirical methods, and topic of investigation. Read More

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http://dx.doi.org/10.1080/21507716.2012.678550DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3413296PMC
January 2012
1 Read

Barriers to Considering Ethical and Societal Implications of Research: Perceptions of Life Scientists.

AJOB Prim Res 2012 19;3(3):40-50. Epub 2012 Jun 19.

Mayo Clinic.

BACKGROUND: As part of an empirical study investigating how life scientists think about ethical and societal implications of their work, and about life science research in general, we sought to elucidate barriers that scientists might face in considering such implications. METHOD: Between 2005 and 2007, we conducted a study consisting of phone interviews, focus groups, and a national survey of life scientists at biomedical research institutions. The study population included graduate students, postdoctoral fellows, faculty, clinical instructors, and research staff. Read More

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http://dx.doi.org/10.1080/21507716.2012.680651DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3409664PMC
June 2012
2 Reads

Reproductive Decision Making and Genetic Predisposition to Sudden Cardiac Death.

AJOB Prim Res 2012 Jul 19;3(3):30-39. Epub 2012 Jun 19.

Yeshiva University.

BACKGROUND: With current genetic technology, it is possible to detect mutations associated with long QT syndrome (LQTS), a hereditary cardiac arrhythmia syndrome. As a result, prospective parents diagnosed with LQTS will have to decide whether or not to prevent its transmission to future generations, either by not procreating or through the use of assisted reproductive technologies or prenatal testing. This paper explores how a hereditary predisposition to sudden cardiac death can influence reproductive decision making. Read More

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http://dx.doi.org/10.1080/21507716.2012.662573DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400258PMC
July 2012
4 Reads

Physician-Researchers' Experiences of the Consent Process in the Sociocultural Context of a Developing Country.

Authors:
Aisha Y Malik

AJOB Prim Res 2011 Jul 11;2(3):38-46. Epub 2011 Oct 11.

University of Oxford.

Background: International guidelines for medical research involving human subjects maintain the primacy of informed consent while recognizing cultural diversity. Methods: This article draws on empirical data obtained from interviews with physician-researchers in teaching hospitals of Lahore, Pakistan, to identify social and cultural factors that affect the consent process for participants in research. Results: This article presents variable findings with regards to communication, comprehension, and decision making. Read More

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http://dx.doi.org/10.1080/21507716.2011.616183DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396358PMC

Ethical Discourse about the Modification of Food for Therapeutic Purposes: How Patients with Gastrointestinal Diseases View the Good, the Bad, and the Healthy.

AJOB Prim Res 2012 Jul 19;3(3):12-20. Epub 2012 Jun 19.

Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, United States.

BACKGROUND: Researchers have the potential to utilize genetic modification (GM) technologies to create a hybrid of "food" and "medicine" that may challenge traditional understandings of what is "natural". Moral and ethical concerns are likely to arise in any discussion of these therapeutic foods and will affect the integration of products into clinical care and daily life. This study examined how patients with chronic gastrointestinal (GI) diseases view probiotics as future bioengineered therapeutic foods. Read More

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http://dx.doi.org/10.1080/21507716.2012.662574DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3389757PMC
July 2012
6 Reads

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care.

AJOB Prim Res 2012 Jan;3(1):1-7

The Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia PA.

Background: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized.

Methods: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed. Read More

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http://dx.doi.org/10.1080/21507716.2011.638019DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4484775PMC
January 2012

What are our AIMs? Interdisciplinary Perspectives on the Use of Ancestry Estimation in Disease Research.

AJOB Prim Res 2012 ;3(4):87-97

Associate Professor, University of Washington - Bioethics & Humanities, Seattle, WA,

Background: Ancestry estimation serves as a tool to identify genetic contributions to disease but may contribute to racial discrimination and stigmatization. We sought to understand user perspectives on the benefits and harms of ancestry estimation to inform research practice and contribute to debates about the use of race and ancestry in genetics.

Methods: Key informant interviews with 22 scientists were conducted to examine scientists' understandings of the benefits and harms of ancestry estimation. Read More

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http://dx.doi.org/10.1080/21507716.2012.717339DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238888PMC
January 2012

Developing a Model of the Benefits and Burdens of Research Participation in Cancer Clinical Trials.

AJOB Prim Res 2012 ;3(2):10-23

National Institutes of Health.

Background: Recruiting and retaining human participants in cancer clinical trials is challenging for many investigators. Although we expect participants to identify and weigh the benefits and burdens of research participation for themselves, it is not clear what burdens adult cancer participants perceive in relation to benefits. We identify key attributes and develop an initial conceptual framework of benefit and burden based on interviews with individuals enrolled in cancer clinical research. Read More

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http://dx.doi.org/10.1080/21507716.2011.653472DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989990PMC
January 2012
2 Reads

Exploring the Ethics of Observational Research: The Case of an HIV Study in Tanzania.

AJOB Prim Res 2012 ;3(4):30-39

Ohio State University.

Background: Observational studies have generally been viewed as incurring minimal risk to participants, resulting in fewer ethical obligations for investigators than intervention studies. In 2004, the lead author (AN) carried out an observational study measuring sexual behavior and the prevalence of HIV, syphilis, and herpes simplex virus type 2 (HSV-2), among Tanzanian agricultural plantation residents (results reported elsewhere). This article uses an ethical lens to consider the consequences of the observational study and explore what, if any, effects it had on participants and their community. Read More

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http://dx.doi.org/10.1080/21507716.2012.714836DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779918PMC
January 2012

Participants' Perceptions of Deep Brain Stimulation Research for Treatment-Resistant Depression: Risks, Benefits, and Therapeutic Misconception.

AJOB Prim Res 2011 Oct;2(4):33-41

University of California-San Francisco.

Background: Deep brain stimulation (DBS) for treatment-resistant depression (TRD) is the focus of great interest and numerous studies. Given the state of this research, the risks of DBS, the uncertainty of direct benefits, and the potential for therapeutic misconception (TM), examination of research participants' perspectives is critical to addressing concerns about the adequacy of consent among people with TRD.

Methods: Among 31 participants considering DBS studies at two sites, self-report questionnaires were used to examine three dimensions of TM (eight true/false items). Read More

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http://dx.doi.org/10.1080/21507716.2011.627579DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516276PMC
October 2011
9 Reads

Medical Decisions Made by Surrogates for Persons with Advanced Dementia within Weeks or Months of Death.

AJOB Prim Res 2011 Oct;2(4):61-65

Johns Hopkins School of Medicine, 600 N. Wolfe Street, Meyer 279, Baltimore, MD 21287.

Background: Surrogates make all medical decisions for persons with advanced dementia. This study describes the types of medical decisions that surrogates faced prior to the person's death and their perceived difficulty and satisfaction with those decisions.

Methods: Seventy-six surrogates of nursing home residents meeting hospice criteria for dementia were followed longitudinally and interviewed following the death of the person with dementia. Read More

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http://dx.doi.org/10.1080/21507716.2011.627580DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4013746PMC
October 2011
1 Read

Content Analysis of Major Textbooks and Online Resources Used in Responsible Conduct of Research Instruction.

AJOB Prim Res 2011 ;2(1):42-46

University of California-Davis and Naval Medical Center San Diego.

Instruction in the responsible conduct of research (RCR) is required for all trainees funded by the National Institues of Health (NIH) or National Science Foundation (NSF). A recent Delphi study identified 53 key topics in 7 core areas that RCR education experts felt should be included in this instruction, which is required of many trainees in clinical and translational research. We performed a content analysis of major textbooks and online resources used in RCR instruction to determine the extent to which the 53 key topics identified in the Delphi study are covered by these resources. Read More

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http://dx.doi.org/10.1080/21507716.2011.564263DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3135017PMC
January 2011
3 Reads

An Empirical Ethics Agenda for Psychiatric Research Involving Prisoners.

AJOB Prim Res 2011 ;2(4):18-25

University of Massachusetts Medical School.

In the past 30 years, the incarcerated population in the United States has more than quadrupled to 2.3 million adults. With an alarmingly high prevalence of mental illness, substance use, and other serious health conditions compounding their curtailed autonomy, prisoners constitute perhaps the nation's most disadvantaged group. Read More

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http://dx.doi.org/10.1080/21507716.2011.627082DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4191925PMC
January 2011

The Myth of Community Differences as the Cause of Variations Among IRBs.

Authors:
Robert Klitzman

AJOB Prim Res 2011 ;2(2):24-33

Columbia University.

Background: Although variations among institutional review boards (IRBs) have been documented for 30 years, they continue, raising crucial questions as to why they persist as well as how IRBs view and respond to these variations.

Methods: In-depth, 2-hour interviews were conducted with 46 IRB chairs, administrators, and members. The leadership of 60 U. Read More

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http://dx.doi.org/10.1080/21507716.2011.601284DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181844PMC
January 2011

Ethics in Psychiatric Research: A Review of 25 Years of NIH-funded Empirical Research Projects.

AJOB Prim Res 2011 Jan 6;2(4):5-17. Epub 2011 Dec 6.

Saint Louis University - Gnaegi Center for Health Care Ethics, 221 North Grand Blvd, St. Louis, Missouri 63103,

BACKGROUND: This paper reviews the past 25 years of empirical research funded by the National Institutes of Health (NIH) on matters of ethics in psychiatric research. METHODS: Using the NIH RePORTER and Medline databases, we identified 43 grants and 77 publications that involved the empirical study of a matter of ethics in research involving mental health service users. RESULTS: These articles provide original and useful information on important topics, most especially the capacity to consent and the voluntariness of consent. Read More

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http://www.tandfonline.com/doi/abs/10.1080/21507716.2011.631
Publisher Site
http://dx.doi.org/10.1080/21507716.2011.631514DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3524581PMC
January 2011
10 Reads
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