scholarly journals A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings

2014 ◽  
Vol 42 (2) ◽  
pp. 190-207 ◽  
Author(s):  
Lisa Eckstein ◽  
Jeremy R. Garrett ◽  
Benjamin E. Berkman
Keyword(s):  
Clinical Significance ◽  
Clinical Relevance ◽  
Clinical Utility ◽  
Genetic Research ◽  
Clinical Validity ◽  
Secondary Findings ◽  
Research Participants ◽  
The Past ◽  
Research Findings ◽  
Analytic Validity

Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear.As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher's obligation to return secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases.

scholarly journals Small Bowel Review: Part I

1996 ◽  
Vol 10 (3) ◽  
pp. 179-189
Author(s):  
ABR Thomson ◽  
JA Thomson ◽  
MJ Ropeleski ◽  
GE Wild
Keyword(s):  
Small Bowel ◽  
Clinical Significance ◽  
Clinical Relevance ◽  
The Past ◽  
Scientific Advances

Major scientific advances have been made over the past few years in the areas of small bowel physiology, pathology, microbiology and clinical sciences. Over 1000 papers have been reviewed and a selective number are considered here. Wherever possible, the clinical relevance of these advances have been identified. There have been a number of important and/or interesting developments in the past year that have clinical significance.

scholarly journals At the Research-Clinical Interface

2020 ◽  
Vol 15 (8) ◽  
pp. 1181-1189 ◽  
Author(s):  
Kathleen M. West ◽  
Erika Blacksher ◽  
Kerri L. Cavanaugh ◽  
Stephanie M. Fullerton ◽  
Ebele M. Umeukeje ◽  
...  
Keyword(s):  
Genetic Research ◽  
Clinical Implications ◽  
Clinical Validity ◽  
Research Results ◽  
Individual Research Results ◽  
Study Participants ◽  
Participant Perspectives ◽  
Apolipoprotein L1 ◽  
Analytic Validity

Whether individual results of genetic research studies ought to be disclosed to study participants has been debated in recent decades. Previously, the prevailing expert view discouraged the return of individual research results to participants because of the potential lack of analytic validity, questionable clinical validity and medical actionability, and questions about whether it is the role of research to provide participants with their data. With additional knowledge of participant perspectives and shifting views about the benefits of research and respect for participants, current expert consensus is moving toward support of returning such results. Significant ethical controversies remain, and there are many practical questions left to address, including appropriate procedures for returning results and the potential burden to clinicians when patients seek guidance about the clinical implications of research results. In this review, we describe current views regarding the return of genetic research results, including controversies and practical challenges, and consider the application of these issues to research on apolipoprotein L1 (APOL1), a gene recently associated with health disparities in kidney disease. Although this case is unique, it illustrates the complexities involved in returning results and highlights remaining questions.

scholarly journals Reporting Genetic Findings to Individual Research Participants: Guidelines From the Swiss Personalized Health Network

2020 ◽  
Vol 11 ◽  
Author(s):  
Alessandro Blasimme ◽  
Caroline Brall ◽  
Effy Vayena
Keyword(s):  
Expert Panel ◽  
Private Insurance ◽  
Genetic Research ◽  
Advisory Group ◽  
University Hospitals ◽  
Data Infrastructure ◽  
Health Network ◽  
Research Participants ◽  
Research Findings ◽  
Personalized Health

In 2017 the Swiss federal government established the Swiss Personalized Health Network (SPHN), a nationally coordinated data infrastructure for genetic research. The SPHN advisory group on Ethical, Legal, and Social Implications (ELSI) was tasked with the creation of a recommendation to ensure ethically responsible reporting of genetic research findings to research participants in SPHN-funded studies. Following consultations with expert stakeholders, including geneticists, pediatricians, sociologists, university hospitals directors, patient representatives, consumer protection associations, and insurers, the ELSI advisory group issued its recommendation on “Reporting actionable genetic findings to research participants” in May 2020. In this paper we outline the development of this recommendation and the provisions it contains. In particular, we discuss some of its key features, namely: (1) that participation in SPHN-funded studies as a research subject is conditional to accepting that medically relevant genetic research findings will be reported; (2) that a Multidisciplinary Expert Panel (MEP) should be created to support researchers’ decision-making processes about reporting individual genetic research findings; (3) that such Multidisciplinary Expert Panel will make case-by-case decisions about whether to allow reporting of genetic findings, instead of relying on a pre-defined list of medically relevant variants; (4) that research participants shall be informed of the need to disclose genetic mutations when applying for private insurance, which may influence individual decisions about participation in research. By providing an account of the procedural background and considerations leading to the SPHN recommendation on “Reporting actionable genetic findings to research participants,” we seek to promote a better understanding of the proposed guidance, as well as to contribute to the global dialog on the reporting of genetic research findings.

International Research and Variation in Views of Ethnicity

2012 ◽  
Vol 2 (2) ◽  
pp. 66-72
Author(s):  
Ella Inglebret ◽  
Amy Skinder-Meredith ◽  
Shana Bailey ◽  
Carla Jones ◽  
Ashley France
Keyword(s):  
United States ◽  
Classification System ◽  
International Research ◽  
The United States ◽  
Research Articles ◽  
Journal Articles ◽  
Research Participants ◽  
The Past ◽  
International Scale ◽  
Publication Patterns

The authors in this article first identify the extent to which research articles published in three American Speech-Language-Hearing Association (ASHA) journals included participants, age birth to 18 years, from international backgrounds (i.e., residence outside of the United States), and go on to describe associated publication patterns over the past 12 years. These patterns then provide a context for examining variation in the conceptualization of ethnicity on an international scale. Further, the authors examine terminology and categories used by 11 countries where research participants resided. Each country uses a unique classification system. Thus, it can be expected that descriptions of the ethnic characteristics of international participants involved in research published in ASHA journal articles will widely vary.

Type V Bekesy Pattern: Interpretation and Clinical Utility

1967 ◽  
Vol 10 (4) ◽  
pp. 733-744 ◽  
Author(s):  
William F. Rintelmann ◽  
Earl R. Harford
Keyword(s):  
Clinical Utility ◽  
The Past ◽  
Type V ◽  
Clinical Cases

Recent studies indicate there is some disagreement concerning the interpretation and clinical utility of the Type V Bekesy pattern. Bekesy tracings obtained over the past six years from a sample of clinical cases were analyzed and a definition was established for the Type V pattern. This definition was applied to Bekesy tracings obtained from normal listeners, hypoacusics, and pseudohypoacusics. The Type V pattern was found frequently among pseudohypoacusics and only rarely among other individuals.

Macedonia Faculties’ Students - “Chrisi Avgi” (Right Party) Followers’ Critique on the Greek Educational Policy

2014 ◽  
Vol 2013 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Kalerante Evagelia
Keyword(s):  
National Identity ◽  
Cultural Identity ◽  
Educational Policy ◽  
Educational System ◽  
Political Party ◽  
Moral Values ◽  
Political Issues ◽  
The Past ◽  
Research Findings ◽  
History Books

AbstractThe present paper is involved with the Pedagogical faculties’ students’ critique on the current educational system as it has been altered after 1981. The research was carried out utilizing both quantitative and qualitative tools. Students-voters participated in the interviews whereas active voters were difficult to be located to meet the research requirements. The dynamics of the specific political party is based on a popular profile in terms of standpoints related to economic, social and political issues. The research findings depict the students’ strong wish for a change of the curricula and a turn towards History and Religion as well as an elevation of the Greek historic events, as the History books that have been written and taught at schools over the past years contributed to the downgrading of the Greek national and cultural identity. There is also a students’ strong belief that globalization and the immigrants’ presence in Greece have functioned in a negative way against the Greek ideal. Therefore, an overall change of the educational content could open the path towards the reconstruction of the moral values and the Greek national identity.

The Voodoo Doll Self-Injury Task: A New Measure of Sub-Clinical Self-Harm Tendencies

2017 ◽  
Author(s):  
David Skylan Chester ◽  
Tchiki Davis ◽  
C. Nathan DeWall
Keyword(s):  
Risk Factors ◽  
Clinical Utility ◽  
Experimental Designs ◽  
Clinical Validity ◽  
Total N ◽  
Self Injury ◽  
Trait Level ◽  
Self Harm ◽  
Initial Support

We introduce a new measure of sub-clinical self-harm tendencies, the Voodoo Doll Self-Injury Task (VDSIT). In this computer task, participants virtually stick a number of sharp pins in a doll that represents themselves. Across five community and undergraduate samples who were not recruited based on their self-harm history or risk (total N = 1,289), VDSIT scores were higher among participants with histories of actual self-injury and were positively correlated with state and trait level motivations to self-harm. VDSIT scores did not correspond to tendencies to harm others, showed sensitivity to experimental manipulations that increase self-harm tendencies, and were positively correlated with established risk factors for self-harm (e.g., depression). The VDSIT did not, on average, elicit significant distress from participants during or after the task, even among participants who had previously engaged in self-harm. Whereas the clinical utility of this measure remains unexamined, these findings provide initial support for the VDSIT’s sub-clinical validity, which can help researchers accurately, economically, and rapidly measure state and trait level self-harm tendencies using both correlational and experimental designs.

Analysis of the Nascar Hall of Fame Exhibition Event: A Generation-Based Market Segmentation Approach

2019 ◽  
Vol 23 (6) ◽  
pp. 913-926
Author(s):  
Kakyom Kim ◽  
Giri Jogaratnam
Keyword(s):  
Generation X ◽  
Market Segmentation ◽  
Generation Y ◽  
Generational Differences ◽  
The Past ◽  
The Us ◽  
Segmentation Approach ◽  
Research Findings ◽  
Hall Of Fame ◽  
Southeastern Region

Research findings on generations have been becoming useful for event organizers and destination developers over the past decades. The current study investigated generational differences in exhibition dimensions, satisfaction, and future intentions along with trip characteristics of visitors to the NASCAR Hall of Fame Exhibition event held in a medium-sized city in the southeastern region of the US. Analysis confirmed the existence of six exhibition dimensions labeled as "exhibits," "staff," "facility," "concessions," "audio tours," and "hard cards" on the event. As part of the most substantial results, there were both dissimilarities and similarities in the exhibition dimensions across four generations including "Matures," "Baby Boomers," "Generation X," and "Generation Y." Analysis also suggested significant differences in exhibition visitors' overall satisfaction, future intentions, and trip characteristics across the generations. Some useful implications are discussed for exhibition event managers and organizers.

Neighborhoods and Intimate Partner Violence: A Decade in Review

2021 ◽  
pp. 155708512098763
Author(s):  
Emily M. Wright ◽  
Gillian M. Pinchevsky ◽  
Min Xie
Keyword(s):  
Intimate Partner Violence ◽  
Partner Violence ◽  
Structural Features ◽  
Intimate Partner ◽  
Neighborhood Context ◽  
Policy Implications ◽  
Economic Disadvantage ◽  
The Past ◽  
Research Findings ◽  
And Gender

We consider the broad developments that have occurred over the past decade regarding our knowledge of how neighborhood context impacts intimate partner violence (IPV). Research has broadened the concept of “context” beyond structural features such as economic disadvantage, and extended into relationships among residents, collective “action” behaviors among residents, cultural and gender norms. Additionally, scholars have considered how the built environment might foster (or regulate) IPV. We now know more about the direct, indirect, and moderating ways that communities impact IPV. We encourage additional focus on the policy implications of the research findings.

I said, they said: The ethnographic backstage and the politics of producing engaged anthropology

Ethnography ◽  
2021 ◽  
pp. 146613812110168
Author(s):  
Roseann Liu
Keyword(s):  
Power Relations ◽  
Research Participants ◽  
Research Findings ◽  
Engaged Anthropology ◽  
Equal Power ◽  
Critical Aspects

Two commonly articulated goals of engaged anthropology include: 1) creating equal power relations with research participants; and 2) producing scholarship that critiques inequality. Though these seem commensurate, this article discusses how working toward both goals can lead to conflict when collaborators vehemently disagree with the critical aspects of your research findings. This article argues that writing about the ethnographic backstage — the background negotiations that rarely make it to the printed page — can help engaged anthropologists foster more egalitarian relations when it comes to ethnographic representation and can sharpen our sociocultural critiques. Because engaged anthropology, by definition, is shaped by negotiations with research participants, examining the ethnographic backstage helps us better understand an important axis in the production of anthropological knowledge.

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