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Between December 2012 and September 2013 the United Kingdom government oversaw one of the largest destructions of a collection of human-derived samples ever conducted. Approximately 7,753,000 DNA samples and 1,766,000 DNA computerized profiles associated with the UK's policing National DNA Database (NDNAD) were destroyed or deleted. This paper considers this moment of exceptional erasure and the consequent implementation of new processes for routinely discarding and keeping samples and their associated computer records. It is divided into two parts. The first discusses the rapid growth of the NDNAD; the changing legal, ethical and political landscape within which it was promoted and contested; and the developments that led to the decision to limit its scope. The second shifts focus to the operational challenge of implementing the destruction of samples and deletion of records. The NDNAD case allows us to examine the labour and continuing uncertainties involved in erasure of biological data and the emerging norms and practices associated with collecting DNA in differing formats. It also sheds new light on the importance, interconnection and ongoing instability of the ethical and practical biovalue of genetic collections: as the paper argues, far from ending the NDNAD, a more rigorous regime of erasure has helped, for the moment at least, to secure its future.
On the 150th anniversary of the birth of William Lashly, this paper explores what may be deduced about this stoker, who accompanied Scott on both his expeditions, from archived unpublished correspondence and artefacts. It draws particularly on letters he wrote to Reginald Skelton and Robert Gibbings and concludes that Lashly, in addition to being a physically strong member of Scott's teams, was also a thoughtful and perceptive man with the ability to report and reflect beyond what might have been expected of someone of his background and education. Though modest, Lashly was proud of what the he and his colleagues had achieved and remained an enthusiast for Antarctic matters all his life.
The Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire was developed with direct patient involvement in questionnaire design, conduct and analysis using patient-centered outcomes to assess health status in patients with hemophilia (PWH). Phase 1 confirmed robustness of the methodology and feasibility. Phase 2a investigated individual test-retest reliability. Phase 2b will explore population level reproducibility.
PWH and non-PWH individuals who attended a hemophilia-related workshop were asked to complete the PROBE questionnaire 3 times (paper-based survey on 2 consecutive days and then a web-based version). Test-retest reliability was analyzed using the percentage agreement and Kappa statistic. Kappa coefficient interpretation .81-1.00 almost perfect, .61- .80 substantial; .41- .60 moderate; .21 -.40 fair; .00 -.20, slight; and < .00 poor agreement.
Sixty-three participants from twenty-one countries were enrolled with a median age of 50 (range 14–76) years. Of these, thirty (47.6 percent) were PWH or carriers, thirty-three (52.5 percent) were participants with no known bleeding disorders. On general health domain, Kappa coefficients ranged from .69 to .92, indicating substantial to almost perfect agreement, for all items. Reliability of the web-based questionnaire showed moderate to substantial agreement for all except one item. For the hemophilia-related domain, Kappa coefficients ranged from .5-1.0. Of these, five of eleven items were in perfect agreement (Kappa = 1.0). Reliability of web-based questionnaire items were in substantial to almost perfect agreement. For overall health related quality of life, the EuroQol five dimensions questionnaire (EQ-5D) had Kappa coefficients of .62 to .92. Intraclass correlation coefficient of visual analog scale (VAS) was .90 (95 percent Confidence Interval, CI; .83-.94). Test-retest reliability was comparable between hemophilia patients and participants with no known bleed.
Phase 2a demonstrated individual test-retest reliability and suggests PROBE is a reliable tool to assess Patient Reported Outcomes in PWH. The Web-based questionnaire has an acceptable agreement with the standard paper-based version in all domains. PROBE Phase 2b, to demonstrate reproducibility at the population level, is on-going. To date, 1,039 participants have been recruited from 10 countries.
Composite nanostructured foams consisting of a metallic shell deposited on a polymeric core were formed by plating copper via electroless deposition on electrospun polycaprolactone (PCL) fiber mats. The final structure consisted of 1000-nm scale PCL fibers coated with 100s of nm of copper, leading to final core-shell thicknesses on the order of 1000-3000 nm. The resulting open cell, core-shell foams had relative densities between 4 and 15 %. By controlling the composition of the adjuncts in the plating bath, particularly the composition of formaldehyde, the relative thickness of copper coating as the fiber diameter could be controlled. As-spun PCL mats had a nominal compressive modulus on the order of 0.1 MPa; adding a uniform metallic shell increased the modulus up to 2 MPa for sub-10 % relative density foams. A computational materials science analysis using density functional theory was used to explore the effects pre-treatment with Pd may have on the density of nuclei formed during electroless plating.