Parental Perspectives on Pharmacological Clinical Trials: a Qualitative Study in Down Syndrome and Fragile X Syndrome.

Research studies focusing on parents' perspectives of pharmacological clinical trials have not kept pace with the number of emerging pharmacologic clinical trials in Down syndrome (DS) and Fragile X syndrome (FXS). Since individuals with DS or FXS have limited cognitive ability to make decisions about their participation in clinical trials, it is important to consider the parents' perspectives and explore the ways in which decisions are made for their children. Using a semi-structured interview, we enrolled 9 parents of a child(ren) with FXS and 15 with a child with DS to analyze their views, experiences, and knowledge of pharmacological clinical trials. Although our study is preliminary in nature, it revealed that parents are generally supportive of pharmacological clinical trials, yet there may be concerns about safety and long-term implications and consideration for their child in the decision process. There is also parental misunderstanding of the objectives of pharmacological clinical trials; thus, it is important for pharmaceutical companies, study investigators, clinicians/medical professionals, and parent advocacy groups to collaborate to provide appropriate and up-to-date educational resources that fully explain the risks and benefits of clinical trials.

Ethical perspectives on knowledge translation in rehabilitation.

Although the literature on the ethical dimensions of knowledge creation, use, and dissemination is voluminous, it has not particularly examined the ethical dimensions of knowledge translation in rehabilitation. Yet, whether research is done in a wet lab or treatments are provided to patients in therapeutic settings, rehabilitation professionals commonly use (as well as create) knowledge and disseminate it to peers, patients, and various others. This article will refer to knowledge creation, use, and transfer as knowledge translation and examine some of its numerous ethical challenges. Three ethical dimensions of knowledge translation will particularly attract our attention: (1) the quality of knowledge disseminated to rehabilitationists; (2) ethical challenges in being too easily persuaded by or unreasonably resistant to putative knowledge; and (3) organizational barriers to knowledge translation. We will conclude with some recommendations on facilitating the ethical soundness of knowledge translation in rehabilitation.

An integrated approach to addressing addiction and depression in college students.

The authors present an integrated, interdisciplinary approach to address the problem of increasing student mental health issues on college campuses. The model uses addiction and depression as lenses into the problem and links residence life and academic and community internship experiences. The project has a positive impact on student attitudes and actions and strengthens and broadens the campus network required to ensure optimal student mental health.

A Model for Postdoctoral Education That Promotes Minority and Majority Success in the Biomedical Sciences.

How does the United States maintain the highest-quality research and teaching in its professional science workforce and ensure that those in this workforce are effectively trained and representative of national demographics? In the pathway to science careers, the postdoctoral stage is formative, providing the experiences that define the independent work of one's first faculty position. It is also a stage in which underrepresented minorities (URMs) disproportionately lose interest in pursuing academic careers in science and, models suggest, a point at which interventions to increase proportions of URMs in such careers could be most effective. We present a mixed-methods, case study analysis from 17 years of the Fellowships in Research and Science Teaching (FIRST) postdoctoral program, to our knowledge the largest and longest continuously running science postdoctoral program in the United States. We demonstrate that FIRST fellows, in sharp contrast to postdocs overall, are inclusive of URMs (50% African American; 70% women) and as or more successful in their fellowships and beyond as a comparison group (measured by publication rate, attainment of employment in academic science careers, and eventual research grant support). Analysis of alumni surveys and focus group discussions reveals that FIRST fellows place highest value on the cohort-driven community and the developmental teaching and research training the program provides.

The absent professor: why we don't teach research ethics and what to do about it.

Research ethics education in the biosciences has not historically been a priority for research universities despite the fact that funding agencies, government regulators, and the parties involved in the research enterprise agree that it ought to be. The confluence of a number of factors, including scrutiny and regulation due to increased public awareness of the impact of basic research on society, increased public and private funding, increased diversity and collaboration among researchers, the impressive success and speed of research advances, and high-profile cases of misconduct, have made it necessary to reexamine how the bioscience research community at all levels provides ethics education to its own. We discuss the need to and reasons for making ethics integral to the education of bioscientists, approaches to achieving this goal, challenges this goal presents, and responses to those challenges.

The American science pipeline: sustaining innovation in a time of economic crisis.

Significant limitations have emerged in America's science training pipeline, including inaccessibility, inflexibility, financial limitations, and lack of diversity. We present three effective programs that collectively address these challenges. The programs are grounded in rigorous science and integrate through diverse disciplines across undergraduate, graduate, and postdoctoral students, and resonate with the broader community. We discuss these models in the context of current economic constraints on higher education and the urgent need for our institutions to recruit and retain diverse student populations and sustain the successful American record in scientific education and innovation.

Incorporating a new bioinformatics component into genetics at a historically black college: outcomes and lessons.

Many students at minority-serving institutions are underexposed to Internet resources such as the human genome project, PubMed, NCBI databases, and other Web-based technologies because of a lack of financial resources. To change this, we designed and implemented a new bioinformatics component to supplement the undergraduate Genetics course at Clark Atlanta University. The outcomes of the Bioinformatics course were assessed. During the first week of the semester, students were assigned the Felder-Soloman's Index of Learning Styles Inventory. The overwhelming majority of students were visual (82.1%) and sequential (75.0%) learners. Furthermore, pre- and postcourse surveys were administered during the first and the last week of the course to assess learning, confidence level, and mental activity. These indicated students increased the number of hours spent using computers and doing homework. Students reported confidence in using computers to study genetics increased, enabling them to better visualize and understand genetics. Furthermore, students were more mentally engaged in a more social learning environment. Although the students appreciated the value of the bioinformatics component, they reported the additional work load was substantial enough to receive additional course credit.

A model for teaching research ethics.

A model is described for implementing a program in research ethics education in the face of federal and institutional mandates and current resource, disciplinary, and infrastructure limitations. Also discussed are the historical background, content and evaluation process of the workshop at the heart of the program, which reaches a diverse group of over 250 students per year--from first-year graduate students in basic research labs to clinical fellows. The workshop addresses central issues in both everyday laboratory ethics and in larger societal questions. Goals include improving overall awareness of ethics guidelines and philosophy and enhancing skills in identifying and then analyzing the ethical components of situations. Pedagogies used and their effectiveness and that of the overall workshop and extended program are addressed. Programs like these have initiated a shift in the culture of basic research, which is a critical need given the current atmosphere.