Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. Sharing patients’ and family members’ data collectively raises an ethical tension between the value of datasets and the (...) rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members’ clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants. Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them. (shrink)
>Engelhardt’s After God gives a comprehensive perspective on the deepest and hardest issues in both moral philosophy and bioethics of our time. Although the book is an intelligent critique of contemporary moral philosophy in favor of a kind of traditionalism rooted in the perspective of the Orthodox Church, containing numerous forceful arguments, I ultimately disagree with Engelhardt on several main points stemming from his pessimistic view of our current culture and society. I have neither the pretense to open new perspectives, (...) nor to put forward new arguments, and I am aware that I might be wrong. I simply want to present a different position on the quest for meaning. (shrink)
Purpose Recent research has found unrealistic optimism among patient-subjects in early-phase oncology trials. Our aim was to investigate the cognitive and motivational factors that evoke this bias in this context. We expected perceptions of control to be a strong correlate of unrealistic optimism. Methods A study of patient-subjects enrolled in early-phase oncology trials was conducted at two sites in the USA. Respondents completed questionnaires designed to assess unrealistic optimism and several risk attribute variables that have been found to evoke the (...) bias in other contexts. Results One hundred and seventy-one patient-subjects agreed to be interviewed for our study. Significant levels of perceived controllability were found with respect to all nine research-related questions. Perceptions of control were found to predict unrealistic optimism. Two other risk attribute variables, awareness of indicators and mental image, were correlated with unrealistic optimism. However, in multivariate regression analysis, awareness and mental image dropped out of the model and perceived controllability was the only factor independently associated with unrealistic optimism. Conclusion Patient-subjects reported that they can, at least partially, control the benefits they receive from participating in an early-phase oncology trial. This sense of control may underlie unrealistic optimism about benefiting personally from trial participation. Effective interventions to counteract unrealistic optimism may need to address the psychological factors that give rise to distorted risk/benefit processing. (shrink)
The traditional paradigm of medicine assumes that health is a natural given depending on a body's intrinsic teleology, and that medicine aims at restoring or preserving health, making a physician only an "assistant to nature." I argue that nowadays this paradigm is becoming obsolete, because the concept of health is no longer a "natural given" and interventions on the human body attempt not only to help nature's teleology, but also to change it whenever doing so can satisfy human needs and (...) wants. We should abandon the term "medicine" and adopt the term "health care" to mark such an epoch-making transition, analogous to that marking the passage from "alchemy" to "chemistry.". (shrink)
The authors analyze deficiencies and perils of the European Convention on Human Rights and Biomedicine , in particular the concept of human rights as given by natural law and the Conventions stand on germline therapy and its refutation of therapeutic enhancement.
An application of the entropic theory of perception to evolutionary systems indicates that environmental entropy increases will exert pressures on an organism to adapt. We speculate that the instability caused by such environmental changes will also cause an increase in the mutation rate of organisms leading to an eventual increase in their complexity. Such complexity generation allows organisms to adapt to the more entropic environment. Although we conclude that increases in environmental entropy cause an organism to evolve into a more (...) complex organism, increases in entropy may not be necessary for complexity generationper se. (shrink)
Can happiness be achieved by means of human will and reason or does it depend on natural conditions which escape the control of man? Is it an expression of autonomy or of heteronomy? The Enlightenment gives manifold answers to this question. Sometimes -above all in England and France -happiness is defined in terms opf pleasure and thus heteronomy is stressed; in other cases -above all in Germany -happiness is conceived as perfection, hence it is rather autonomy that is emphasized. For (...) his part Kant neatly contrasts happiness with autonomy, both from the ethicalpractical standpoint and from the technical-practical one . Such a contrast, which still leaves room for happiness in Kant's view, is carried to extremes in the idealistic tradition that comes to drastically anti-eudemonic results, since the latter either completely rejects happiness as expressing heteronomy or deprives it of its sensitive constituents and embodies it into interior bliss. (shrink)
The subject of the present article is the following fact. Consider an effective uniform space. A generally constructed metric from the uniformity has the property that a sequence from the space effectively converges with respect to the uniform topology if and only if it does with respect to the induced metric. This can be shown without assuming the computability of the metric.
Memory research distinguishes two components of episodes—the event or item and the spatial–temporal setting or context in which it occurred. The wordcontextis used either globally to denote the physical, social, or emotional environment at study and test or it is used locally to refer to another word or picture that was paired with a particular target. In this article, we report four experiments that investigated the influence of two different nonverbal local contexts on explicit word recognition and implicit word identification (...) test performance. In each experiment, university students studied words that were displayed against various extra-item local contexts, and the contexts were either the same or different at study and test. What differed across experiments was the nature of the contexts: for Experiments 1 and 2, it was a band of color that stretched across the computer screen, and for Experiments 3 and 4, the context was a colored line drawing. The combined findings from all experiments provide no evidence of memory context effects on priming. By contrast, recognition test performance showed reliable MCEs but only when the local context was a concrete drawing or when it was a color that was target-related or appropriate. The discussion compared these findings with those from previous studies that concerned the cueing effectiveness of verbal and nonverbal extra-item contexts. (shrink)
This paper aims at revealing the originality of Max Weber’s conception of the logical category of “historicity”, suggesting that in his writings on the methodology of the social sciences we can find a stimulating and forerunner contribution to the analysis of some logical and formal problems concerning the relationship between human knowledge and the chaos of reality (what we might call, ante-litteram, “science of chaos”). In particular, considering that in Weber’s conception scientific knowledge finds no facts “to grasp” in the (...) natural world, but rather a chaos of unique and infinitely divisible events, the analysis will be focused on the following aspects: (a) Weber’s separation of causal imputation from the notion of necessary (natural) law; (b) the importance attached to “probability judgments” with different degrees of certainty; (c) the proclaimed irreducibility of individual events to scientific models, laws, and (ideal)-types; (d) the effects imputed to the differentiation of the point of view of a scientific observer. (shrink)
In recent years drastic shifts in the paradigms of politics, economics and technologies have occurred throughout the world. The shifts in these three fields are all related. It is our responsibility to investigate these shifts from the aspects of society and mankind for the prosperity of future generations. For this, societies should share with each other their wisdom and knowledge in an effort to plan for the future.