Systematic reviews of empirical literature on bioethical topics: Results from a meta-review.

BACKGROUND: In bioethics, especially nursing ethics, systematic reviews are increasingly popular. The overall aim of a systematic review is to provide an overview of the published discussions on a specific topic. While a meta-review on systematic reviews on normative bioethical literature has already been performed, there is no equivalent for systematic reviews of empirical literature on ethical topics. OBJECTIVE: This meta-review aims to present the general trends and characteristics of systematic reviews of empirical bioethical literature and to evaluate their reporting quality. RESEARCH DESIGN: Literature search was performed on PubMed and Google Scholar. Qualitative content analysis and quantitative approaches were used to evaluate the systematic reviews. Characteristics of systematic reviews were extracted and quantitatively analyzed. The reporting quality was measured using an adapted PRISMA checklist. FINDINGS: Seventy-six reviews were selected for analysis. Most reviews came from the field of nursing (next to bioethics and medicine). Selected systematic reviews investigated issues related to clinical ethics (50%), followed by research ethics (36%) and public health ethics or organizational ethics (14%). In all, 72% of the systematic reviews included authors' ethical reflections on the findings and 59% provided ethical recommendations. Despite the heterogeneous reporting of the reviews, reviews using PRISMA tended to score better regarding reporting quality. DISCUSSION: The heterogeneity currently observed is due both to the interdisciplinary nature of nursing ethics and bioethics, and to the emerging nature of systematic review methods in these fields. These results confirm the findings of our previous review of systematic reviews on normative literature, thereby highlighting a recurring methodological gap in systematic reviews of bioethical literature. This also indicates the need to develop more robust methodological standards. CONCLUSION: Through its extensive overview of the characteristics of systematic reviews of empirical literature on ethical topics, this meta-review is expected to inform further discussions on minimal standards and reporting guidelines.

Participants' decision to enroll in cohort studies with biobanks: quantitative insights from two German studies.

AIM: To understand participants' actual motivations to enroll in cohort studies with biobanks. METHODS: Participants of two such studies currently ongoing in Germany were invited to fill in a questionnaire about their decision to enroll. RESULTS: From the 623 questionnaires completed, contributing to scientific knowledge appeared as a main motive for enrollment, followed by learning about personal health status and receiving personal medical advice. CONCLUSION: Motivating participation as a way to contribute to the common good rather than as a way to obtain personal benefits appears to be particularly appropriate to ensure participants' long-term commitment and should therefore be further investigated in this setting.

Participants' Accounts on Their Decision to Join a Cohort Study With an Attached Biobank: A Qualitative Content Analysis Study Within Two German Studies.

Reliable participation and sustained retention rates are crucial in longitudinal studies involving human subjects and biomaterials. Understanding the decision to enroll is an essential step to develop adequate strategies promoting long-term participation. Semi-structured interviews were implemented with newly recruited and long-term participants randomly drawn from two ongoing longitudinal studies with a biobank component in Germany. Iterative qualitative content analysis was applied to the transcribed interviews. Participants (n = 31) expressed their decision to enroll or remain in the study as the result of the complex interplay of individual factors, institutional cues, study-related features, and societal dynamics. Different forms of trust were identified as central within the elements used to explain participation and could be compared to Dibben, Morris, and Lean's dynamic model of interpersonal trust. Given these high levels of trust, an investigation of the morality of the trustful relationship at stake between participants and research(ers) is warranted.

Newspaper coverage of biobanks.

Background. Biobanks are an important research resource that provides researchers with biological samples, tools and data, but have also been associated with a range of ethical, legal and policy issues and concerns. Although there have been studies examining the views of different stakeholders, such as donors, researchers and the general public, the media portrayal of biobanks has been absent from this body of research. This study therefore examines how biobanking has been represented in major print newspapers from Australia, Canada, the United Kingdom and the United States to identify the issues and concerns surrounding biobanks that have featured most prominently in the print media discourse. Methods. Using Factiva, articles published in major broadsheet newspapers in Canada, the US, the UK, and Australia were identified using specified search terms. The final sample size consisted of 163 articles. Results. Majority of articles mentioned or discussed the benefits of biobanking, with medical research being the most prevalent benefit mentioned. Fewer articles discussed risks associated with biobanking. Researchers were the group of people most quoted in the articles, followed by biobank employees. Biobanking was portrayed as mostly neutral or positive, with few articles portraying biobanking in a negative manner. Conclusion. Reporting on biobanks in the print media heavily favours discussions of related benefits over risks. Members of the scientific research community appear to be a primary source of this positive tone. Under-reporting of risks and a downtrend in reporting on legal and regulatory issues suggests that the print media views such matters as less newsworthy than perceived benefits of biobanking.

Could minors be living kidney donors? A systematic review of guidelines, position papers and reports.

The purpose of this study is to systematically review guidelines, position papers, and reports on living kidney donation by minors. We systematically searched the databases such as Medline, Embase, ISI Web of knowledge, Google scholar as well as the websites of various bioethics committees, transplant organizations and societies. Guidelines were included if they provided recommendations for or against living kidney donation by minors. Data were analyzed using qualitative content analysis. We included 39 documents in this study. Twenty seven of these endorse an absolute prohibition of living kidney donation by minors, because of concerns regarding the decision-making capacity of minors, the impartiality of parental authorization, the best interests of the minor, and the necessity of the donation. Twelve guidelines, however, would exceptionally allow living kidney donation by minors, provided that adequate safeguards are put in place, including an assessment of the minor's autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restriction to situations of last resort. A more adequate medical and psychosocial follow-up of living kidney donors may likely contribute to a more unified approach towards living kidney donation by minors.

Why do participants enroll in population biobank studies? A systematic literature review.

Therapeutic misconception has been extensively studied and addressed within clinical trials. An equivalent in the genetic research context has been identified as diagnostic misconception. There is not much data on this phenomenon in population-based biobank studies. Since misconceptions may generate undue motives to enroll, the authors aimed at reviewing studies addressing the reasons to participate in biobank studies. The main databases were searched using relevant keywords. Studies were included if peer-reviewed, in English and describing the reasons to enroll was provided by actual and apparently healthy donors. Although the 13 studies retrieved were heterogeneous, a scheme summarizing the main aspects involved in the decision-making process was developed. Expectation of personal benefit through health-related information was found in eight studies. Three of them discussed whether this expectation could be considered a form of therapeutic misconception. The magnitude of this phenomenon is an important ethical concern and ought to be further studied.