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

Design of clinical trials for germline gene editing stretches current accepted standards for human subjects research. Among the challenges involved is a set of issues concerning intergenerational monitoring—long-term follow-up study of subjects and their descendants. Because changes made at the germline would be heritable, germline gene editing could have adverse effects on individuals’ health that can be passed on to future generations. Determining whether germline gene editing is safe and effective for clinical use thus may require intergenerational monitoring. The aim of this paper is to identify and argue for the significance of a set of ethical issues raised by intergenerational monitoring in future clinical trials of germline gene editing. Though long-term, multigenerational follow-up study of this kind is not without precedent, intergenerational monitoring in this context raises unique ethical challenges, challenges that go beyond existing protocols and standards for human subjects research. These challenges will need to be addressed if clinical trials of germline gene editing are ever pursued.

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Qualitative Researcher Reflexivity: A Follow-Up Study with Female Sexual Assault Survivors

The Qualitative Report ◽

10.46743/2160-3715/2015.2303 ◽

2015 ◽

Author(s):

Stephanie Hoover ◽

Susan Morrow

Keyword(s):

Qualitative Research ◽

Sexual Assault ◽

Qualitative Data ◽

Ethical Issues ◽

Research Process ◽

Multiple Sources ◽

Qualitative Researcher ◽

Sexual Assault Survivors ◽

Follow Up Study

Motivated by researcher reflexivity, the author sought to learn from participants about the sensitive, ethical issues of the qualitative research process. The current study followed up with eight women who had previously participated in an interview-based study about sexual assault disclosure. Multiple sources of qualitative data were triangulated, including interviews, follow-up interviews, interviews from the original study, and participant checks. Phenomenological analysis yielded five themes: (a) Meaning of Participation, (b) Trust in the Researcher, (c) Connection with the Other Participants, (d) Changing Comfort, and (e) Recommendations to Increase Participants’ Comfort. Based on these results, recommendations are provided for researchers conducting reflexive qualitative research practices.

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Practice Changes Based on Research Findings

Social Casework ◽

10.1177/104438947505600406 ◽

1975 ◽

Vol 56 (4) ◽

pp. 242-250 ◽

Cited By ~ 1

Author(s):

Patrick V. Riley

Keyword(s):

Decision Making ◽

Large Family ◽

Counseling Services ◽

Follow Up Study ◽

Research Findings

A follow-up study of clients of a large family agency adds a new dimension to decision-making and leads to recommendations to improve counseling services

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Sri Lankan perspective of knowledge and attitude towards genomic medicine and research: protocol for a qualitative study

10.31235/osf.io/e9bq7 ◽

2018 ◽

Cited By ~ 1

Author(s):

Shiran Chamika ◽

Lydia Weiss ◽

Kaushalya Jayaweera ◽

Athula Sumathipala ◽

Jonathan Ives

Keyword(s):

Sri Lanka ◽

Ethical Issues ◽

Qualitative Interviews ◽

Genomic Medicine ◽

Genomic Research ◽

Sri Lankan ◽

Knowledge And Attitudes ◽

Public Perspectives ◽

Knowledge And Attitude

BackgroundGenomic research allows new discoveries to alleviate human suffering but in turn raises significant ethical issues. In this context, public acceptance and engagement is a major determinant of optimization of genomic research. Therefore, understanding public perspectives related to genomic research is imperative, as it provides a foundation to address ethical issues which may be unknown to researchers and other stakeholders. Although genomic medicine and research has developed in Sri Lanka during the past decade, there is a paucity of understanding about public knowledge and attitudes towards it. MethodsThis research, therefore, aims to explore the understanding, knowledge and attitudes of a Sri Lankan public towards genomic medicine and research, in order to consider more effective and appropriate ways of communicating about the risks and benefits of participating in genomic research. Twenty four participants will be purposively selected from a previously conducted Colombo Twin and Singleton follow-up study (COTASS-2). In-depth qualitative interviews with a semi structured topic guide will be used to collect data, which will be analysed using conventional content analysis.DiscussionThis study is the first of its kind to explore public perspectives towards genomic medicine and research in Sri Lanka. Findings may have implications for producing guidelines for ethical genomic research in Sri Lanka.

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Electron Microscopy of Human Gallstones

Proceedings, annual meeting, Electron Microscopy Society of America ◽

10.1017/s0424820100065523 ◽

1971 ◽

Vol 29 ◽

pp. 296-297

Author(s):

C. Wolpers ◽

R. Blaschke

Keyword(s):

Electron Microscopy ◽

Room Temperature ◽

Bile Pigment ◽

X Ray Diffraction ◽

Triclinic Crystal System ◽

X Ray ◽

Follow Up Study ◽

Infra Red ◽

Main Components

Scanning microscopy was used to study the surface of human gallstones and the surface of fractures. The specimens were obtained by operation, washed with water, dried at room temperature and shadowcasted with carbon and aluminum. Most of the specimens belong to patients from a series of X-ray follow-up study, examined during the last twenty years. So it was possible to evaluate approximately the age of these gallstones and to get information on the intensity of growing and solving.Cholesterol, a group of bile pigment substances and different salts of calcium, are the main components of human gallstones. By X-ray diffraction technique, infra-red spectroscopy and by chemical analysis it was demonstrated that all three components can be found in any gallstone. In the presence of water cholesterol crystallizes in pane-like plates of the triclinic crystal system.

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What Does Evidence-Based Practice Mean to You? A Follow-Up Study Examining School-Based Speech-Language Pathologists' Perspectives on Evidence-Based Practice

American Journal of Speech-Language Pathology ◽

10.1044/2019_ajslp-19-00171 ◽

2020 ◽

Vol 29 (2) ◽

pp. 688-704

Author(s):

Katrina Fulcher-Rood ◽

Anny Castilla-Earls ◽

Jeff Higginbotham

Keyword(s):

Clinical Practice ◽

Research Evidence ◽

Evidence Based Practice ◽

Evidence Based ◽

Clinical Expertise ◽

Speech Language Pathologists ◽

School Based ◽

Research Findings ◽

Ebp Implementation

Purpose The current investigation is a follow-up from a previous study examining child language diagnostic decision making in school-based speech-language pathologists (SLPs). The purpose of this study was to examine the SLPs' perspectives regarding the use of evidence-based practice (EBP) in their clinical work. Method Semistructured phone interviews were conducted with 25 school-based SLPs who previously participated in an earlier study by Fulcher-Rood et al. 2018). SLPs were asked questions regarding their definition of EBP, the value of research evidence, contexts in which they implement scientific literature in clinical practice, and the barriers to implementing EBP. Results SLPs' definitions of EBP differed from current definitions, in that SLPs only included the use of research findings. SLPs seem to discuss EBP as it relates to treatment and not assessment. Reported barriers to EBP implementation were insufficient time, limited funding, and restrictions from their employment setting. SLPs found it difficult to translate research findings to clinical practice. SLPs implemented external research evidence when they did not have enough clinical expertise regarding a specific client or when they needed scientific evidence to support a strategy they used. Conclusions SLPs appear to use EBP for specific reasons and not for every clinical decision they make. In addition, SLPs rely on EBP for treatment decisions and not for assessment decisions. Educational systems potentially present other challenges that need to be considered for EBP implementation. Considerations for implementation science and the research-to-practice gap are discussed.

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