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Institutional cultures, social norms, and systemic defaults influence both normative beliefs regarding standards of care and treatments plans that may not benefit seriously ill patients.

More than 7% of all German physicians became members of the Nazi SS during World War II, compared with less than 1% of the general population. In so doing, these doctors willingly participated in genocide, something that should have been antithetical to the values of their chosen profession. The participation of physicians in torture and murder both before and after World War II is a disturbing legacy seldom discussed in medical school, and underrecognised in contemporary medicine. Is there something inherent in being a physician that promotes a transition from healer to murderer? With this historical background in mind, the author, a medical student, defines and reflects upon moral vulnerabilities still endemic to contemporary medical culture.

Genetic testing for Tay-Sachs and Canavan disease is particularly important for Ashkenazi Jews, as both conditions are more frequent in that population. This comparative case study was possible because of different patenting and licensing practices. The role of DNA testing differs between Tay-Sachs and Canavan diseases. The first-line screening test for Tay-Sachs remains an enzyme activity test, rather than genotyping. Genotyping is used for preimplantation diagnosis and confirmatory testing. In contrast, DNA-based testing is the basis for Canavan screening and diagnosis. The HEXA gene was cloned at the National Institutes of Health, and the gene was patented but has not been licensed. The ASPA gene was cloned and patented by Miami Childrens Hospital (MCH). MCH did not inform family members and patient groups that had contributed to the gene discovery that it was applying for a patent, and pursued restrictive licensing practices when a patent issued in 1997. This led to intense controversy, litigation, and a sealed, nonpublic 2003 settlement that apparently allowed for nonexclusive licensing. A survey of laboratories revealed a possible price premium for ASPA testing, with per-unit costs higher than for other genetic tests in the SACGHS case studies. The main conclusion from comparing genetic testing for Tay-Sachs and Canavan diseases, however, is that patenting and licensing conducted without communication with patients and advocates causes mistrust and can lead to controversy and litigation, a negative model to contrast with the positive model of patenting and licensing for genetic testing of cystic fibrosis.

Context The Bayh-Dole Act of 1980, which gave federal grantees and contractors the right to patent and license inventions stemming from federally funded research, was intended to encourage commercial dissemination of research that would otherwise languish for want of a patent incentive (Eisenberg 1996; Berman 2008). The case of Columbia University’s Axel patents, which claimed a scientific method to introduce foreign proteins into nucleated cells, illustrates a secondary outcome of the Bayh-Dole Act: the incentive for federal grantees and contractors to pursue royalty revenues from patented research, even in inventions for which commercial use did not require patents. Methods The authors conducted oral interviews with two of the three inventors, as well as a former high-ranking administrator at Columbia; corresponded with several faculty members at Columbia to obtain key royalty figures and information about Columbia’s licensing strategy; performed patent searches; examined legal records of court proceedings; and analyzed citation trends for the seminal papers disclosing the invention of co-transformation. Findings Columbia University and the inventors profited handsomely from the Axel patents, earning $790 in revenues through licensing arrangements that tapped profits from end-products made by biotechnology and pharmaceutical companies. Columbia’s aggressive effort to extend the patent duration also led to considerable legal expenditures and fierce controversy. Obtaining and enforcing a 2002 patent, in particular, proved costly, politically difficult, financially fruitless, and attracted intense criticism for behavior unbecoming a nonprofit academic institution. Conclusions This case study raises several important questions about the logic of Bayh-Dole and future revisions of the Act: are revenue generation and financial rewards for inventing valuable technologies legitimate goals for the Bayh-Dole Act? If so, does the federal government need credible mechanisms for oversight, or checks and balances on the rights conferred?

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Background Websites are among the most important communication distribution tools in everyday life. Does this apply to assisted living facility too? Can website information be used to assess quality of care? Can Public Health Administration use information provided on nursing home websites to define whether accreditation standards are met? The aim of this study was to assess websites of all the assisted living facility of the Metropolitan City of Milan (MCM) Agency for Health Protection (ATS) territory according to five dimensions: Description, Utility tools, eHealth literacy, Accreditation Standard and Usability, to answer the questions above. Methods A total of 141 websites for MSM ATS nursing homes were identified. A tailored check-list approach was used to investigate each of the 5 dimensions for all websites. For the dimension Description we analyse 20 items, for the Utility tools 14 items, for the eHealth literacy 12 items, for the Accreditation Standard 5 item and for Usability 6 item. A score was assigned to each dimension based on completeness of check-list items. Results Of the 160 nursing homes in the MSM ATS, 141 had a website (88%). No website was complete of all items. The average score was 34% the higher was 65% the lower 12%. The five dimensions description, utility tools, eHealth literacy, accreditation standard and usability scored 44%, 16%, 25%, 18% and 29% respectively. The Item more founded was Mission, 137 sites (97%), the least was Customer Satisfaction in 5 Sites (4%). We evaluated the Social Media presence: 81 facility (57%) have at least one social media. Conclusions Notwithstanding the Internet and Social Media are a powerful tool to promote eHealth Literacy are underused. Health promotion is shared more with the social media rather than the webpages. The webpage could become a powerful instrument to use by Administration to define whether accreditation standards are met but the contents on the sites are few and non-consistent. Key messages 11.500 people are assisted by our nursing homes, so part of the population can be reach through websites. We analyse them and discover that health promotion is spread by social media not by websites. We wanted to understand if Public Health Administration can evaluate accreditation standards through the website. We discover that standards can be evaluated on line rather than in-site assessment.