scholarly journals Stakeholder engagement to ensure the sustainability of biobanks: a survey of potential users of biobank services

2021 ◽  
Author(s):  
Corinna Klingler ◽  
Magdaléna von Jagwitz-Biegnitz ◽  
Ronny Baber ◽  
Karl-Friedrich Becker ◽  
Edgar Dahl ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Stakeholder Engagement ◽  
Research Institutions ◽  
External Communication ◽  
General Demand ◽  
Collection Strategies

AbstractBiobanks are important infrastructures facilitating biomedical research. After a decade of rolling out such infrastructures, a shift in attention to the sustainability of biobanks could be observed in recent years. In this regard, an increase in the as yet relatively low utilisation rates of biobanks has been formulated as a goal. Higher utilisation rates can only be achieved if the perspectives of potential users of biobanks—particularly researchers not yet collaborating with biobanks—are adequately considered. To better understand their perspectives, a survey was conducted at ten different research institutions in Germany hosting a centralised biobank. The survey targeted potential users of biobank services, i.e. researchers working with biosamples. It addressed the general demand for biosamples, strategies for biosample acquisition/storage and reasons for/against collaborating with biobanks. In total, 354 researchers filled out the survey. Most interestingly, only a minority of researchers (12%) acquired their biosamples via biobanks. Of the respondents not collaborating with biobanks on sample acquisition, around half were not aware of the (services of the) respective local biobank. Those who actively decided against acquiring biosamples via a biobank provided different reasons. Most commonly, respondents stated that the biosamples required were not available, the costs were too high and information about the available biosamples was not readily accessible. Biobanks can draw many lessons from the results of the survey. Particularly, external communication and outreach should be improved. Additionally, biobanks might have to reassess whether their particular collection strategies are adequately aligned with local researchers’ needs.

Protecting Research, Preserving Trust

2015 ◽  
Author(s):  
Josephine Johnston ◽  
Naomi Scheinerman
Keyword(s):  
Biomedical Research ◽  
Special Interest ◽  
Conflicts Of Interest ◽  
Research Integrity ◽  
Research Institutions ◽  
The Past ◽  
Financial Interests ◽  
Financial Conflicts Of Interest ◽  
The U.S ◽  
Financial Relationships

This chapter reviews the two main concerns about financial relationships with industry: that they could conflict with research-related obligations leading to biased or flawed research and an incomplete research record, and that they could undermine trust in biomedical research, researchers, and research institutions. We show that these concerns are valid, and that they persist in the U.S., despite a gradual tightening over the past decade of rules and regulations regarding financial conflicts of interest in biomedical research. The threat that financial interests can pose to research integrity should be of special interest to psychiatry for two reasons: they are prevalent in this field, and they pose heightened risks due to the nature of psychiatry itself. Finally, we recommend that psychiatry—and individual research psychiatrists—take more seriously the threat posed by financial relationships with industry, and work together to develop additional strategies for avoiding and managing financial conflicts of interest.

scholarly journals A recipe for mediocrity and disaster, in five axioms

eLife ◽  
2013 ◽  
Vol 2 ◽  
Author(s):  
Henry R Bourne
Keyword(s):  
Biomedical Research ◽  
Research Institutions ◽  
The Us

Biomedical research in the US will become unsustainable unless scientists and research institutions start to question certain assumptions they have long taken for granted.

scholarly journals Citizen Science and Biomedical Research: Implications for Bioethics Theory and Practice

10.28945/3579 ◽  
2016 ◽  
Vol 19 ◽  
pp. 325-343 ◽  
Author(s):  
Chris W Callaghan
Keyword(s):  
Data Collection ◽  
Citizen Science ◽  
Biomedical Research ◽  
Stakeholder Engagement ◽  
Stakeholder Involvement ◽  
Scientific Research ◽  
High Volume ◽  
Theory And Practice ◽  
Volume Data ◽  
Bioethical Issues

Certain trends in scientific research have important relevance to bioethics theory and practice. A growing stream of literature relates to increasing transparency and inclusivity of populations (stakeholders) in scientific research, from high volume data collection, synthesis, and analysis to verification and ethical scrutiny. The emergence of this stream of literature has implications for bioethics theory and practice. This paper seeks to make explicit these streams of literature and to relate these to bioethical issues, through consideration of certain extreme examples of scientific research where bioethical engagement is vital. Implications for theory and practice are derived, offering useful insights derived from multidisciplinary theory. Arguably, rapidly developing fields of citizen science such as informing science and others seeking to maximise stakeholder involvement in both research and bioethical engagement have emerged as a response to these types of issues; radically enhanced stakeholder engagement in science may herald a new maximally inclusive and transparent paradigm in bioethics based on lessons gained from exposure to increasingly uncertain ethical contexts of biomedical research.

scholarly journals From bedside to benchmarks: A physician-scientist workforce dashboard for biomedical research institutions

2018 ◽  
Vol 2 (5) ◽  
pp. 305-311
Author(s):  
Adrienne Zell ◽  
Lindsey Smith ◽  
N. David Yanez ◽  
Jeanne-Marie Guise ◽  
Ryan Pelkey ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Research Funding ◽  
Complete Picture ◽  
Data Generation ◽  
Research Institutions ◽  
National Data ◽  
Oregon Health ◽  
Physician Scientist ◽  
Research Workforce ◽  
Physician Scientists

AbstractIntroductionThere is growing concern about the declining physician-scientist workforce. NIH recently provided a national dashboard describing the biomedical research workforce, but local strategies are needed.MethodsWe used curated local and national data to develop a workforce dashboard.ResultsMany trends at Oregon Health & Science University (OHSU) were similar to those nationally, such as the increasing percentage of Research Project Grant (RPG)-holding PhDs and the aging RPG population, but differences were also apparent. At OHSU, nearly ¾ of physician-scientist RPGs hold MD-only, compared with nationally, where nearly half are MD/PhD. OHSU also lags in the percentage of RPGs held by women physician-scientists.ConclusionsOur analysis also permitted us to gain a more complete picture of research funding that has been done nationally. We used these data to develop a dashboard that allows our institution to develop policies to increase the numbers of physician-scientists. The data generation approaches and dashboard are likely to be useful at other institutions, as well.

scholarly journals How practitioners between bench and bedside evaluate biomedical translation?

2020 ◽  
Author(s):  
Arno Simons ◽  
Barbara Hendriks ◽  
Martin Reinhart ◽  
Faten Ahmed
Keyword(s):  
Translational Research ◽  
Biomedical Research ◽  
Organizational Practices ◽  
Research Institutions ◽  
Methodological Study ◽  
Biomedical Field

Abstract While translational research (TR) aims at changing regulatory and organizational practices in the biomedical field, surprisingly little is known about how practitioners in the lab or the clinic think about translation. Addressing this gap, we present results from a Q-methodological study on the meanings and values associated with translation held by researchers, clinicians, and clinician scientists at two major German biomedical research institutions implementing TR strategies. We identify eight different collective understandings of translation, with respect to both where primary translational problems are located and what the most immediate and effective measures should be. Our findings suggest that there may not be a one-fits-all solution for improving translation and that general regulatory and organizational measures may be less effective than measures addressing specific audiences and their specific viewpoints. TR does, however, work well as an umbrella term in stimulating and orchestrating a productive interaction between various viewpoints, practices, and contexts.

scholarly journals Ethical considerations for involving adolescents in biomedical HIV prevention research

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Rita Nakalega ◽  
Carolyne Akello ◽  
Brenda Gati ◽  
Clemensia Nakabiito ◽  
Monica Nolan ◽  
...  
Keyword(s):  
Hiv Prevention ◽  
Sexual Activity ◽  
Adolescent Girls ◽  
Biomedical Research ◽  
Stakeholder Engagement ◽  
Prevention Research ◽  
Ethical Considerations ◽  
Community Perspectives ◽  
Hiv Research ◽  
Adolescent Participation

Abstract Background Involvement of adolescent girls in biomedical HIV research is essential to better understand efficacy and safety of new prevention interventions in this key population at high risk of HIV infection. However, there are many ethical issues to consider prior to engaging them in pivotal biomedical research. In Uganda, 16–17-year-old adolescents can access sexual and reproductive health services including for HIV or other sexually transmitted infections, contraception, and antenatal care without parental consent. In contrast, participation in HIV prevention research involving investigational new drugs requires adolescents to have parental or guardian consent. Thus, privacy and confidentiality concerns may deter adolescent participation. We describe community perspectives on ethical considerations for involving adolescent girls in the MTN 034 study in Uganda. Methods From August 2017 to March 2018, we held five stakeholder engagement meetings in preparation for the MTN 034 study in Kampala, Uganda (NCT03593655): two with 140 community representatives, two with 125 adolescents, and one with 50 adolescents and parents. Discussions were moderated by the study team. Proceedings were documented by notetakers. Summary notes described community perspectives of adolescent participation in HIV research including convergent, divergent or minority views, challenges, and proposed solutions. Results Most community members perceived parental or guardian consent as a principal barrier to study participation due to concerns about adolescent disclosure of pre-marital sex, which is a cultural taboo. Of 125 adolescent participants, 119 (95%) feared inadvertent disclosure of sexual activity to their parents. Community stakeholders identified the following critical considerations for ethical involvement of adolescents in HIV biomedical research: (1) involving key stakeholders in recruitment, (2) ensuring confidentiality of sensitive information about adolescent sexual activity, (3) informing adolescents about information to be disclosed to parents or guardians, (4) offering youth friendly services by appropriately trained staff, and (5) partnering with community youth organizations to maximize recruitment and retention. Conclusions Stakeholder engagement with diverse community representatives prior to conducting adolescent HIV prevention research is critical to collectively shaping the research agenda, successfully recruiting and retaining adolescents in HIV clinical trials and identifying practical strategies to ensure high ethical standards during trial implementation.

scholarly journals How practitioners between bench and bedside evaluate biomedical translation

2019 ◽  
Author(s):  
Arno Simons ◽  
Barbara Hendriks ◽  
Martin Reinhart ◽  
Faten Ahmed
Keyword(s):  
Translational Research ◽  
Biomedical Research ◽  
Organizational Practices ◽  
Research Institutions ◽  
Methodological Study ◽  
Biomedical Field

Given that translational research (TR) aims at changing regulatory and organizational practices in the biomedical field, surprisingly little is known about how those who are actually supposed to practice translation in the lab or the clinic think about it. Addressing this gap, we present results from a q-methodological study on the meanings and values associated with translation held by researchers and clinicians at two major German biomedical research institutions implementing TR strategies. We identify eight different collective understandings of translation in practice, with respect to both where primary translational problems are located and what the most immediate and effective measures should be. Our findings suggest that there may not be a one-fits-all solution for improving translation and that general regulatory and organizational measures may be less effective than measures addressing specific audiences and their specific viewpoints.

scholarly journals What’s in a name?

eLife ◽  
2017 ◽  
Vol 6 ◽  
Author(s):  
Michael D Schaller ◽  
Gary McDowell ◽  
André Porter ◽  
Dorothy Shippen ◽  
Katherine L Friedman ◽  
...  
Keyword(s):  
United States ◽  
Case Studies ◽  
Biomedical Research ◽  
Academic Research ◽  
The United States ◽  
Research Institutions ◽  
Training Experience ◽  
Postdoctoral Training ◽  
Job Titles ◽  
Training Compensation

Numerous concerns have been raised about the sustainability of the biomedical research enterprise in the United States. Improving the postdoctoral training experience is seen as a priority in addressing these concerns, but even identifying who the postdocs are is made difficult by the multitude of different job titles they can carry. Here, we summarize the detrimental effects that current employment structures have on training, compensation and benefits for postdocs, and argue that academic research institutions should standardize the categorization and treatment of postdocs. We also present brief case studies of two institutions that have addressed these challenges and can provide models for other institutions attempting to enhance their postdoctoral workforces and improve the sustainability of the biomedical research enterprise.

Sign in / Sign up

Export Citation Format

Share Document