scholarly journals Genomic Privacy

2018 ◽  
Vol 64 (12) ◽  
pp. 1696-1703 ◽  
Author(s):  
Abraham P Schwab ◽  
Hung S Luu ◽  
Jason Wang ◽  
Jason Y Park

Abstract BACKGROUND Genetic information is unique among all laboratory data because it not only informs the current health of the specific person tested but may also be predictive of the future health of the individual and, to varying degrees, all biological relatives. CONTENT As DNA sequencing has become ubiquitous with decreasing cost, large repositories of genomic data have emerged from the domains of research, healthcare, law enforcement, international security, and recreational consumer interest (i.e., genealogy). Broadly shared genomic data are believed to be a key element for future discoveries in human disease. For example, the National Cancer Institute's Genomic Data Commons is designed to promote cancer research discoveries by providing free access to the genome data sets of 12000 cancer patients. However, in parallel with the promise of curing diseases, genomic data also have the potential for harm. Genomic data that are deidentified by standard healthcare practices (e.g., removal of name, date of birth) can be reidentified by methods that combine genomic software with publicly available demographic databases (e.g., phone book). Recent law enforcement cases (i.e., Bear Brook Murders, Golden State Killer) in the US have demonstrated the power of combining DNA profiles with genealogy databases. SUMMARY We examine the current environment of genomic privacy and confidentiality in the US and describe current and future risks to genomic privacy. Reidentification and inference of genetic information of biological relatives will become more important as larger databases of clinical, criminal, and recreational genomic information are developed over the next decade.

F1000Research ◽  
2014 ◽  
Vol 3 ◽  
pp. 80 ◽  
Author(s):  
Amalio Telenti ◽  
Erman Ayday ◽  
Jean Pierre Hubaux

The storage of greater numbers of exomes or genomes raises the question of loss of privacy for the individual and for families if genomic data are not properly protected. Access to genome data may result from a personal decision to disclose, or from gaps in protection. In either case, revealing genome data has consequences beyond the individual, as it compromises the privacy of family members. Increasing availability of genome data linked or linkable to metadata through online social networks and services adds one additional layer of complexity to the protection of genome privacy.  The field of computer science and information technology offers solutions to secure genomic data so that individuals, medical personnel or researchers can access only the subset of genomic information required for healthcare or dedicated studies.


Author(s):  
Karen Pollitz ◽  
Beth N. Peshkin ◽  
Eliza Bangit ◽  
Kevin Lucia

Most states have enacted genetic nondiscrimination laws in health insurance, and federal legislation is pending in Congress. Scientists worry fear of discrimination discourages some patients from participating in clinical trials and hampers important medical research. This paper describes a study of medical underwriting practices in the individual health insurance market related to genetic information. Underwriters from 23 companies participated in a survey that asked them to underwrite four pairs of hypothetical applicants for health insurance. One person in each pair had received a positive genetic test result indicating increased risk of a future health condition—breast cancer, hemochromatosis, or heart disease—for a total of 92 underwriting decisions on applications involving genetic information. In seven of these 92 applications, underwriters said they would deny coverage, place a surcharge on premiums, or limit covered benefits based on an applicant's genetic information.


2018 ◽  
Vol 14 (2) ◽  
pp. 97-107 ◽  
Author(s):  
Staci Defibaugh

Small talk in medical visits has received ample attention; however, small talk that occurs at the close of a medical visit has not been explored. Small talk, with its focus on relational work, is an important aspect of medical care, particularly so considering the current focus in the US on the patient-centered approach and the desire to construct positive provider– patient relationships, which have been shown to contribute to higher patient satisfaction and better health outcomes. Therefore, even small talk that is unrelated to the transactional aspect of the medical visit in fact serves an important function. In this article, I analyze small talk exchanges between nurse practitioners (NPs) and their patients which occur after the transactional work of the visit is completed. I focus on two exchanges which highlight different interactional goals. I argue that these examples illustrate a willingness on the part of all participants to extend the visit solely for the purpose of constructing positive provider–patient relationships. Furthermore, because exchanges occur after the ‘work’ of the visit has been completed, they have the potential to construct positive relationships that extend beyond the individual visit.


Author(s):  
Farhan Zahid

Pakistan remains a country of vital importance for Al-Qaeda. It is primarily because of Al-Qaeda’s advent, rise and shelter and not to mention the support the terrorist organization found at the landscape of Pakistan during the last two decades. The emergence of in Pakistan can be traced back to the Afghan War (1979-89), with a brief sabbatical in Sudan the Islamist terrorist group rose to gain prominence after shifting back to Afghanistan. It then became a global ‘Islamist’ terrorist entity while based in neighboring Afghanistan and found safe havens in the erstwhile tribal areas of Pakistan in the aftermath of the US invasion of Afghanistan in 2001. Prior to its formation in 1988 in Peshawar (Pakistan), it had worked as Maktab al-Khidmat (Services Bureau) during the Afghan War.2 It had its roots in Pakistan, which had become a transit point of extremists en route to Afghanistan during the War. All high profile Al-Qaeda leaders, later becoming high-value targets, and members of its central Shura had lived in Pakistan at one point in their lives. That is the very reason the Al-Qaeda in Pakistan is termed as Al-Qaeda Core or Central among law enforcement practitioners and intelligence communities. Without going into details of Al-Qaeda’s past in Pakistan the aim of this article is to focus on its current state of affairs and what future lies ahead of it in Pakistan.


Author(s):  
David Willetts

Universities have a crucial role in the modern world. In England, entrance to universities is by nation-wide competition which means English universities have an exceptional influence on schools--a striking theme of the book. This important book first investigates the university as an institution and then tracks the individual on their journey to and through university. In A University Education, David Willetts presents a compelling case for the ongoing importance of the university, both as one of the great institutions of modern society and as a transformational experience for the individual. The book also makes illuminating comparisons with higher education in other countries, especially the US and Germany. Drawing on his experience as UK Minister for Universities and Science from 2010 to 2014, the author offers a powerful account of the value of higher education and the case for more expansion. He covers controversial issues in which he was involved from access for disadvantaged students to the introduction of L9,000 fees. The final section addresses some of the big questions for the future, such as the the relationship between universities and business, especially in promoting innovation.. He argues that the two great contemporary trends of globalisation and technological innovation will both change the university significantly. This is an authoritative account of English universities setting them for the first time in their new legal and regulatory framework.


Author(s):  
Pete Dale

Numerous claims have been made by a wide range of commentators that punk is somehow “a folk music” of some kind. Doubtless there are several continuities. Indeed, both tend to encourage amateur music-making, both often have affiliations with the Left, and both emerge at least partly from a collective/anti-competitive approach to music-making. However, there are also significant tensions between punk and folk as ideas/ideals and as applied in practice. Most obviously, punk makes claims to a “year zero” creativity (despite inevitably offering re-presentation of at least some existing elements in every instance), whereas folk music is supposed to carry forward a tradition (which, thankfully, is more recognized in recent decades as a subject-to-change “living tradition” than was the case in folk’s more purist periods). Politically, meanwhile, postwar folk has tended more toward a socialist and/or Marxist orientation, both in the US and UK, whereas punk has at least rhetorically claimed to be in favor of “anarchy” (in the UK, in particular). Collective creativity and competitive tendencies also differ between the two (perceived) genre areas. Although the folk scene’s “floor singer” tradition offers a dispersal of expressive opportunity comparable in some ways to the “anyone can do it” idea that gets associated with punk, the creative expectation of the individual within the group differs between the two. Punk has some similarities to folk, then, but there are tensions, too, and these are well worth examining if one is serious about testing out the common claim, in both folk and punk, that “anyone can do it.”


2021 ◽  
Author(s):  
Rafael B. Dextro ◽  
Endrews Delbaje ◽  
Simone R. Cotta ◽  
Jonathan P. Zehr ◽  
Marli F. Fiore
Keyword(s):  

1980 ◽  
Vol 1 (8) ◽  
pp. 3-6
Author(s):  
George J. Annas

In an extraordinary and highly controversial 5-4 decision, the United States Supreme Court decided on June 30, 1980, that the United States Constitution does not require either the federal government or the individual states to fund medically necessary abortions for poor women who qualify for Medicaid.At issue in this case is the constitutionality of the Hyde Amendment. The applicable 1980 version provides:|N]one of the funds provided by this joint resolution shall be used to perform abortions except where the life of the mother would be endangered if the fetus were carried to term; or except for such medical procedures necessary for the victims of rape or incest when such rape or incest has been reported promptly to a law enforcement agency or public health service, (emphasis supplied)


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 682.1-682
Author(s):  
S. Chrysidis ◽  
U. Møller Døhn ◽  
L. Terslev ◽  
U. Fredberg ◽  
T. Lorenzen ◽  
...  

Background:Giant Cell Arteritis (GCA) is one of the most common systemic vasculitis. Temporal artery biopsy (TAB) has been the standard test to confirm the diagnosis of GCA. However, TAB has a lower sensitivity than clinical diagnosis and up to 44% of biopsy-negative patients are clinically diagnosed as having GCA.In a recent meta-analysis of the diagnostic performance of ultrasound (US) in GCA the sensitivity was 77 % (1). The included studies were performed by expert groups in single centres. In the to date only multicentre study (TABUL) investigating the diagnostic accuracy of US compared to clinical diagnosis after 6 months the sensitivity was lower (54%) (2)Objectives:To evaluate the diagnostic accuracy of vascular US compared to TAB in a multicentre study.Methods:In three Danish centres patients suspected for GCA were included during a period of two years. At baseline, clinical and laboratory data were collected and vascular US of temporal, facial, common carotid and axillary artery were performed. The US examinations were performed with high frequency transducers (15-18 MHZ) and followed by a TAB. All ultrasongraphers had participated in the same standardized US educational program and were blinded to clinical and laboratory data. An external expert blinded to clinical and laboratory data evaluated all images and made the final US diagnosis.A positive sign for vasculitis in cranial arteries was defined as a hypoechoic intima media complex (IMC) thickening (halo sign) and a positive compression sign. A homogeneous IMC increased thickness in axillary artery of ≥1mm and in common carotid artery ≥1.5mm was defined as vasculitis.The consultant rheumatologist’s diagnosis at 6 months after initial presentation was considered as the reference standard for the diagnosis of GCA.Results:During the recruitment period, 112 patients were included, 59% females, mean (SD) age 72.4(7.9) years, among which 91(81.3%) fulfilled the ACR 1990 classification criteria for GCA. 92% of the patients reported a newly emerged localized headache, while 49 (43.8%) experienced polymyalgia rheumatic symptoms.TAB was positive in 46(41.1%) and inconclusive in 6 patients, who were excluded from the analysis. Mean (SD) duration of glucocorticoid therapy prior to US and TAB was 0.91(1.55) and 4.02(2.61) days, respectively. In 62 patients, the final diagnosis was GCA.In all patients with a positive TAB, the US of the temporal artery was also positive for GCA. Of 19 cases with positive US and negative TAB, 12 were clinically diagnosed with GCA of whom 6 had isolated large vessel involvement on US. Among 41 patients with both negative US and TAB, 4 were clinically diagnosed with GCA (Box 1)US had a sensitivity of 93% and specificity of 84% for the diagnosis of GCA, while the sensitivity for TAB was lower (74%) with a specificity of 100%. For the diagnosis of GCA, US had a PPV of 89.2 % and a NPV of 90.2%, while for TAB the PPV was 100% and the NPV 73.3%.Conclusion:US evaluation of the temporal, facial and selected supraaortic arteries performed by trained ultrasonographers can replace biopsy in the diagnosis of GCA.Box.1References:[1]Duftner C, Dejaco C, et al. Imaging in diagnosis, outcome prediction and monitoring of large vessel vasculitis: a systematic literature review and metaanalysis informing the EULAR recommendations. RMD Open 2018;4:e000612.[2]Luqmani R et al. The Role of Ultrasound Compared to Biopsy of Temporal Arteries in the Diagnosis and Treatment of Giant Cell Arteritis (TABUL): a diagnostic accuracy and cost-effectiveness study. Health Technol Assess 2016;20:1_238.Disclosure of Interests:stavros chrysidis: None declared, Uffe Møller Døhn: None declared, Lene Terslev Speakers bureau: LT declares speakers fees from Roche, MSD, BMS, Pfizer, AbbVie, Novartis, and Janssen., Ulrich Fredberg: None declared, Tove Lorenzen: None declared, Robin Christensen: None declared, Per Søndergaard: None declared, Jakob Matthisson: None declared, Knud Larsen: None declared, Andreas Diamandopoulos: None declared


2020 ◽  
Vol 96 (2) ◽  
pp. 419-437
Author(s):  
Xiangfeng Yang

Abstract Ample evidence exists that China was caught off guard by the Trump administration's onslaught of punishing acts—the trade war being a prime, but far from the only, example. This article, in addition to contextualizing their earlier optimism about the relations with the United States under President Trump, examines why Chinese leaders and analysts were surprised by the turn of events. It argues that three main factors contributed to the lapse of judgment. First, Chinese officials and analysts grossly misunderstood Donald Trump the individual. By overemphasizing his pragmatism while downplaying his unpredictability, they ended up underprepared for the policies he unleashed. Second, some ingrained Chinese beliefs, manifested in the analogies of the pendulum swing and the ‘bickering couple’, as well as the narrative of the ‘ballast’, lulled officials and scholars into undue optimism about the stability of the broader relationship. Third, analytical and methodological problems as well as political considerations prevented them from fully grasping the strategic shift against China in the US.


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