Background: The use of race as a category in medical research is the focus of an intense debate, complicated by the inconsistency of presumed independent variables, race and ethnicity, on which analysis depends. Interpretation is made difficult by inconsistent methods for determining the race or ethnicity of a participant. The failure to specify how race or ethnicity was determined is common in the published literature.Hypothesis: Criteria by which they assign a research participant to racial or ethnic categories are not reported (...) by published articles.Methods: Methods were reviewed for assigning race and ethnicity of research participants in 268 published reports reporting associations among race , health outcome and genotype.Results: Of the 268 published reports reviewed, it was found that 192 did not explain their methods for assigning race or ethnicity as an independent variable. This was despite the fact that 180 of those reports reached conclusions about associations among genetics, health outcome and race or ethnicity.Conclusions: More attention needs to be given to the definition of race and ethnicity in genetic studies, especially in those diseases where health disparities are known to exist. (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.

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)

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.

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.

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)

In attempting to date the Shield several complementary methods are possible. Roughly these may be classed as literary, historical and archaeological. The literary method indicates that the Shield comes late in the Hesiodic corpus: in particular the use of the F is careful. The historical method suggests a preciser upper limit. Wilamowitz believed that the point of lines 393–401, which give the season in which the combat between Herakles and Kyknos took place, can only be that a commemorative festival was (...) held—at the temple of Apollo at Pagasae, since the scene is laid in Apollo's sanctuary. Mazon continues that the reputation of the temple dates from the end of the Sacred War and the establishment at Pherae of a dynasty with close connections with Delphi : he therefore sets the terminus post quern at about 590. This argument is attractive and possible. Several scholars have attempted to secure a lower limit from the last sentence in Hypothesis A: κα⋯ Στησ⋯χορος δ⋯ φησιν ' Hσ7iota;⋯δου εἶναι τ⋯ πο⋯ημα. But as Wilamowitz observes, we do not know whether the poem in which this mention came was a genuine work of Stesichoros. Certainly it need not make the Shield much earlier than the Stesichorean poem, since our ‘Hesiod’ wrote his epyllion for incorporation in the Ehoiai which was attributed to the genuine Hesiod, and an insertion into such a work could have been very quickly accepted. Mazon's lower limit of 560 is then on insecure grounds. Thirdly there is the possibility that analysis of the decoration of Herakles' shield might give useful comparisons to the conclusions of archaeologists on the chronology of Greek art. It is this method that I shall attempt. (shrink)

We define a physical magnitude as an equivalence class of measurement procedures and formulate sufficient restrictions on the equivalence relation to guarantee meaningful algebraic operations between magnitudes. These restrictions are not sufficient to let the Kochen and Specker argument go through. They are, however, stronger than mere statistical equivalence of measurement procedures and thus are relevant to the problem of the completeness of quantum mechanics. In fact, they give rise to a strong argument for the incompleteness of quantum mechanics.

In attempting to date the Shield several complementary methods are possible. Roughly these may be classed as literary, historical and archaeological. The literary method indicates that the Shield comes late in the Hesiodic corpus: in particular the use of the F is careful. The historical method suggests a preciser upper limit. Wilamowitz believed that the point of lines 393–401, which give the season in which the combat between Herakles and Kyknos took place, can only be that a commemorative festival was (...) held—at the temple of Apollo at Pagasae, since the scene is laid in Apollo's sanctuary. Mazon continues that the reputation of the temple dates from the end of the Sacred War and the establishment at Pherae of a dynasty with close connections with Delphi : he therefore sets the terminus post quern at about 590. This argument is attractive and possible. Several scholars have attempted to secure a lower limit from the last sentence in Hypothesis A: κα⋯ Στησ⋯χορος δ⋯ φησιν ' Hσ7iota;⋯δου εἶναι τ⋯ πο⋯ημα. But as Wilamowitz observes, we do not know whether the poem in which this mention came was a genuine work of Stesichoros. Certainly it need not make the Shield much earlier than the Stesichorean poem, since our ‘Hesiod’ wrote his epyllion for incorporation in the Ehoiai which was attributed to the genuine Hesiod, and an insertion into such a work could have been very quickly accepted. Mazon's lower limit of 560 is then on insecure grounds. Thirdly there is the possibility that analysis of the decoration of Herakles' shield might give useful comparisons to the conclusions of archaeologists on the chronology of Greek art. It is this method that I shall attempt. (shrink)

ARCHAEOLOGYTHE Classical Spartans were noted for their austerity, which seemed already ancient to writers of the fifth century B.C. The early poetry and art of their country show a considerable aesthetic sense. This apparent contradiction has caused some students to conclude that the strict Lycurgan regimen was not introduced till the middle or even the end of the sixth century and that before that date Sparta had culturally been developing in much the same way as other important Greek states. The (...) argument is unsound. (shrink)

ARCHAEOLOGYTHE Classical Spartans were noted for their austerity, which seemed already ancient to writers of the fifth century B.C. The early poetry and art of their country show a considerable aesthetic sense. This apparent contradiction has caused some students to conclude that the strict Lycurgan regimen was not introduced till the middle or even the end of the sixth century and that before that date Sparta had culturally been developing in much the same way as other important Greek states. The (...) argument is unsound. (shrink)