Phylogenies are increasingly prominent across all of biology, especially as DNA sequencing makes more and more trees available. However, their utility is compromised by widespread misconceptions about what phylogenies can tell us, and improved tree thinking is crucial. The most-serious problem comes from reading trees as ladders from left to right - many biologists assume that species-poor lineages that appear early branching or basal are ancestral - we call this the primitive lineage fallacy. This mistake causes misleading inferences about changes (...) in individual characteristics and leads to misrepresentation of the evolutionary process. The problem can be rectified by considering that modern phylogenies of present-day species and genes show relationships among evolutionary cousins. Emphasizing that these are extant entities in the 21st century will help correct inferences about ancestral characteristics, and will enable us to leave behind 19th century notions about the ladder of progress driving evolution. (shrink)

Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing (...) global accesses to diverse data sets. (shrink)

These essays apply influential, pathbreaking psychological studies about women's lives to literature. In their analyses of fictional portraits, contributors both challenge and confirm psychological theories about female identity, about 'connection/separation' as developmental catalysts, and about the impact of gender on 'voice,' moral decision-making, and epistemology in relation to classical and contemporary literary texts, written by both women and men.

Source attributions based on positive versus negative valence were examined in four experiments. The two sources were individuals who were depicted positively or negatively, and the content of their statements was similarly valenced. When valenced information about the sources was provided after learning the statements, test biases to attribute positive statements to the positive source and negative statements to the negative source were strongly present. Providing the same information prior to learning improved memory, but did not entirely eliminate test biases (...) based on valence. Signal detection analysis suggests that these “halo effect” biases are criterion-based and not memory-based. Therefore, the results are more consistent with descriptions of source-monitoring processes that can benefit from familiarity-based partial information as opposed to descriptions in which source monitoring is primarily recollection-based. (shrink)

ABSTRACTDepression is associated with increased emotional response to stress. This is especially the case during the developmental period of adolescence. Cognitive reappraisal is an effective emotion regulation strategy that has been shown to reduce the impact of emotional response on psychopathology. However, less is known about whether cognitive reappraisal impacts the relationship between depressive symptoms and emotional responses, and whether its effects are specific to emotional reactivity or emotional recovery. The current study examined whether cognitive reappraisal moderated the relationship between (...) depressive symptoms and trait or state measures of emotional reactivity and recovery. A community sample of 127 adolescents, at an age of risk for depression, completed self-report measures of trait emotional responding and depressive symptoms. In addition, they completed an in vivo social stress task and were assessed on state emotional reactivity and recove... (shrink)

Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or (...) non-therapeutic benefits for oneself. Conclusions: We discuss the distinction drawn between motives for research participation focused upon self and others, and observe that personal, social and familial motives can be seen as interdependent. For example, research participation that is undertaken to benefit others, particularly relatives, may also offer a number of personal benefits for self, such as enabling participants to feel that they have discharged their social or familial obligations. We argue for the need to move away from simple, static, individualised notions of research participation to a more complex, dynamic and inherently social account. (shrink)

The current study examined whether pigeons could learn to use abstract concepts as the basis for conditionally switching behavior as a function of time. Using a mid-session reversal task, experienced pigeons were trained to switch from matching-to-sample (MTS) to non-matching-to-sample (NMTS) conditional discriminations within a session. One group had prior training with MTS, while the other had prior training with NMTS. Over training, stimulus set size was progressively doubled from 3 to 6 to 12 stimuli to promote abstract concept development. (...) Prior experience had an effect on the initial learning at each of the set sizes but by the end of training there were no group differences, as both groups showed similar within-session linear matching functions. After acquiring the 12-item set, abstract-concept learning was tested by placing novel stimuli at the beginning and end of a test session. Prior matching and non-matching experience affected transfer behavior. The matching experienced group transferred to novel stimuli in both the matching and non-matching portion of the sessions using a matching rule. The non-matching experienced group transferred to novel stimuli in both portions of the session using a non-matching rule. The representations used as the basis for mid-session reversal of the conditional discrimination behaviors and subsequent transfer behavior appears to have different temporal sources. The implications for the flexibility and organization of complex behaviors are considered. (shrink)

Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained. Design: Qualitative interview study. Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK. Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is described (...) as vague or blurred, and this ambiguity is regarded as being sustained by a range of methodological, ethical and economic factors. The implications of these findings for the “therapeutic misconception” are explored. It is argued that while research participation is seen as having therapeutic benefit for individual patients, the interviewees are not labouring under any misconceptions about the relationship between research and clinical care. It is suggested that concepts such as the “therapeutic misconception” may have less relevance in highly technological specialities that are characterised by a developing evidence base. (shrink)

Benjamin G. Cook, Ibn Sabʿîn and Islamic Orthodoxy: A Reassessment.

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

Value creation has long been hailed as the major objective of business firms by many management researchers. Some authors state that a firm must create value for its shareholders; some insist that value must be created not just for shareholders but also for all stakeholders. However, most discussions of value creation do not address an important question: "For whom the value is created?" The purpose of this paper is to take a first step to fill this void and propose a (...) model of value creation along three dimensions: financial, nonfinancial, and time. It is hoped that the model will contribute to a better understanding of how strategic and operational decisions of managers may create value for some stakeholders while destroying it for others. (shrink)

The legal requirements and justifications for collecting patient-identifiable data without patient consent were examined. The impetus for this arose from legal and ethical issues raised during the development of a population-based disease register. Numerous commentaries and case studies have been discussing the impact of the Data Protection Act 1998 and Caldicott principles of good practice on the uses of personal data. But uncertainty still remains about the legal requirements for processing patient-identifiable data without patient consent for research purposes. This is (...) largely owing to ignorance, or misunderstandings of the implications of the common law duty of confidentiality and section 60 of the Health and Social Care Act 2001. The common law duty of confidentiality states that patient-identifiable data should not be provided to third parties, regardless of compliance with the DPA1998. It is an obligation derived from case law, and is open to interpretation. Compliance with section 60 ensures that collection of patient-identifiable data without patient consent is lawful despite the duty of confidentiality. Fears regarding the duty of confidentiality have resulted in a common misconception that section 60 must be complied with. Although this is not the case, section 60 support does provide the most secure basis in law for collecting such data. Using our own experience in developing a disease register as a backdrop, this article will clarify the procedures, risks and potential costs of applying for section 60 support. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Clinical decisions are expected to be based on factual evidence and official values derived from healthcare law and soft laws such as regulations and guidelines. But sometimes personal values instead influence clinical decisions. One way in which personal values may influence medical decision-making is by their affecting factual claims or assumptions made by healthcare providers. Such influence, which we call ‘value-impregnation,’ may be concealed to all concerned stakeholders. We suggest as a hypothesis that healthcare providers’ decision making is sometimes affected (...) by value-impregnated factual claims or assumptions. If such claims influence e.g. doctor–patient encounters, this will likely have a negative impact on the provision of correct information to patients and on patients’ influence on decision making regarding their own care. In this paper, we explore the idea that value-impregnated factual claims influence healthcare decisions through a series of medical examples. We suggest that more research is needed to further examine whether healthcare staff’s personal values influence clinical decision-making. (shrink)

Early last year, the GenEthics Consortium (GEC) of the Washington Metropolitan Area convened at George Washington University to consider a complex case about genetic testing for Alzheimer disease (AD). The GEC consists of scientists, bioethicists, lawyers, genetic counselors, and consumers from a variety of institutions and affiliations. Four of the 8 co-authors of this paper delivered presentations on the case. Supplemented by additional ethical and legal observations, these presentations form the basis for the following discussion.

It has been widely theorized and empirically proven that self-regulated learning is related to more desired learning outcomes, e.g., higher performance in transfer tests. Research has shifted to understanding the role of SRL during learning, such as the strategies and learning activities, learners employ and engage in the different SRL phases, which contribute to learning achievement. From a methodological perspective, measuring SRL using think-aloud data has been shown to be more insightful than self-report surveys as it helps better in determining (...) the link between SRL activities and learning achievements. Educational process mining on the basis of think-aloud data enables a deeper understanding and more fine-grained analyses of SRL processes. Although students’ SRL is highly contextualized, there are consistent findings of the link between SRL activities and learning outcomes pointing to some consistency of the processes that support learning. However, past studies have utilized differing approaches which make generalization of findings between studies investigating the unfolding of SRL processes during learning a challenge. In the present study with 29 university students, we measured SRL via concurrent think-aloud protocols in a pre-post design using a similar approach from a previous study in an online learning environment during a 45-min learning session, where students learned about three topics and wrote an essay. Results revealed significant learning gain and replication of links between SRL activities and transfer performance, similar to past research. Additionally, temporal structures of successful and less successful students indicated meaningful differences associated with both theoretical assumptions and past research findings. In conclusion, extending prior research by exploring SRL patterns in an online learning setting provides insights to the replicability of previous findings from online learning settings and new findings show that it is important not only to focus on the repertoire of SRL strategies but also on how and when they are used. (shrink)