Orphan drug incentives in the pharmacogenomic context: policy responses in the USA and Canada

This chapter examines digital privacy and key terminology associated with the protection of online personal information across two countries and through an education lens. The authors raise awareness of the identified risks for students as their online presence grows. The authors highlight some of the potential consequences of a lack of awareness of the risks associated with sharing information online. They outline the obligations of multiple parties (from the vendor to the end user) when students use online apps, including the teachers and parents who want to protect students' digital privacy. Employing policy analysis and a comparative approach, they examine federal, national, and local legislation, as well as curriculum responses to this issue in the USA and Canada. When the authors compare federal policy responses from these two countries, they find that they differ in instructive ways. The chapter concludes with a focus on risk abatement, including solutions and recommendations.

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Characteristics of orphan drug applications that fail to achieve marketing approval in the USA

Drug Discovery Today ◽

10.1016/j.drudis.2010.11.006 ◽

2011 ◽

Vol 16 (1-2) ◽

pp. 73-80 ◽

Cited By ~ 32

Author(s):

Harald E. Heemstra ◽

Hubert G.M. Leufkens ◽

R.P. Channing Rodgers ◽

Kui Xu ◽

Bettie C.G. Voordouw ◽

...

Keyword(s):

Orphan Drug ◽

Marketing Approval ◽

The Usa

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Scandals of abuse: policy responses in intellectual disabilities

International Journal of Sociology and Social Policy ◽

10.1108/ijssp-12-2013-0117 ◽

2015 ◽

Vol 35 (1/2) ◽

pp. 107-124 ◽

Cited By ~ 3

Author(s):

Peter Mark Halladay ◽

Charlene Harrington

Keyword(s):

Theoretical Framework ◽

Case Study Methodology ◽

Content Type ◽

Descriptive Case Study ◽

Individual Level ◽

Policy Responses ◽

The Social ◽

The Usa ◽

The Individual ◽

The Uk

Purpose – The purpose of this paper is to compare two scandals related to the care of individuals with intellectual and developmental disabilities (I/DD) in the USA and the UK. Design/methodology/approach – A descriptive case study methodology was used to conduct an in-depth qualitative analysis of the two scandals to examine the process of scandal development, and to survey the policy response against policy trends and theories of abuse in each case. The two cases were systematically analysed against a theoretical framework derived from Bonnie and Wallace (2003) theoretical framework for understanding abuse based on its sociocultural context, the social embeddedness of organisations providing care, and the individual level characteristics and interactions of subjects and carers. Findings – In both cases the process of scandal construction was comparable, and each case offered confirmatory support to extant theories of abuse, and to wider policy trends within I/DD. Research limitations/implications – The study examines only the short-term policy responses to the scandals in two countries, based on published material only. Originality/value – This paper contributes an international comparison of the similarities and differences in the social construction of scandal and the policy responses to abuse and neglect of a vulnerable population using systematic analytical frameworks.

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Seeds, food and trade wars: Public opinion and policy responses in the USA and Europe

Journal of Commercial Biotechnology ◽

10.1057/palgrave.jcb.3040081 ◽

2004 ◽

Vol 10 (3) ◽

pp. 258-267 ◽

Cited By ~ 5

Author(s):

Toby A Ten Eyck ◽

George Gaskell ◽

Jonathan Jackson

Keyword(s):

Public Opinion ◽

Policy Responses ◽

The Usa ◽

Trade Wars

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Dercum’s disease: estimating the prevalence of a rare painful loose connective tissue disease

Future Rare Diseases ◽

10.2217/frd-2020-0004 ◽

2021 ◽

Vol 1 (1) ◽

pp. FRD4

Author(s):

Natalie Munguia ◽

B Robert Mozayeni ◽

Thomas F Wright ◽

Karen L Herbst

Keyword(s):

Rare Disease ◽

Orphan Drug ◽

Quality Healthcare ◽

Physician Practices ◽

Orphan Drug Act ◽

The Us ◽

The Usa ◽

Dercum’S Disease ◽

Internet Searches ◽

The Uk

Background: In the USA, the Orphan Drug Act of 1983 defines a rare disease as affecting under 200,000 individuals. Dercum’s disease (DD) is a loose connective (adipose) tissue disease characterized by painful lipomas. While considered a rare disease, the prevalence of DD has not been systematically assessed previously. The objective of this paper is to estimate the prevalence of DD to determine if it is rare or not. Results: Estimates of prevalence of DD using PubMed, the UK Biobank, the US Agency for Health Research and Quality Healthcare Cost and Utilization, physician practices, social media forums and internet searches found the prevalence of DD to be less than 200,000 individuals in the US. These prevalence likely overestimate the disease; however, underestimation may also occur because DD is not well known and may be misdiagnosed. Conclusion: DD meets requirements of the Orphan Drug Act to be classified as a rare disease. Further research should focus on representative population samples in the USA to better estimate the prevalence of DD. Estimating the prevalence is an important first step to increase recognition, research efforts and patient care for people living with DD.

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Techno-globalism and industrial policy responses in the USA and Europe

Intereconomics ◽

10.1007/bf02927162 ◽

1997 ◽

Vol 32 (2) ◽

pp. 74-86 ◽

Cited By ~ 2

Author(s):

Peter Weiss

Keyword(s):

Industrial Policy ◽

Policy Responses ◽

The Usa

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Perceptions of Terrorism and Counterterrorism: Fear, Risk and the 2016 Trump Effect

Journal of Homeland Security and Emergency Management ◽

10.1515/jhsem-2018-0023 ◽

2019 ◽

Vol 17 (1) ◽

Author(s):

Michael Brogan ◽

Frank Louis Rusciano ◽

Victor Thompson ◽

Kayla Walden

Keyword(s):

Common Ground ◽

Terrorist Attack ◽

Treatment Groups ◽

The Public ◽

Electoral Campaigns ◽

Policy Responses ◽

Individual Perceptions ◽

The Usa ◽

The Government ◽

Terrorist Acts

Abstract Our study examines respondents’ perceptions of terrorism and counterterrorism in the USA during the 2016 presidential campaign. It does so by conducting an experiment where a group of respondents were randomly assigned to a vivid example of a terrorist attack and another group did not receive this treatment. The study’s results find opposing individual perceptions of the job government is doing to protect the country from terrorism and on differences among respondents as to the root causes of terrorism. Our research points to one explanation of this difference: Americans feel there is little they can do about terrorism and though the government is working to protect the nation, the public feels the government cannot stop, only prevent, terrorist acts from occurring. This causes the public to shift their perceptions of terrorism away from questions of efficient public policy responses to one of values. The experiment suggests heightened levels of fear among 2016 Trump voters who received the treatment compared to both Republican voters and Clinton supporters, though control and treatment groups also showed variation. Finally, this work highlights a major challenge for counter-terrorism policymakers in dealing with a highly polarized public. Recent electoral campaigns have demonstrated that politicians are actively trying to politicize terrorism. This work provides evidence that these efforts are resonating among the public. The danger of politicizing terrorism is that it blocks efforts to find common ground, between polarized groups in society in keeping the nation safe.

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