The financing of clinical genetics research by disease advocacy organizations: A review of funding disclosures in biomedical journals

2010 ◽  
Vol 152A (12) ◽  
pp. 3051-3056 ◽  
Author(s):  
Richard R. Sharp ◽  
David C. Landy
Keyword(s):  
Clinical Genetics ◽  
Advocacy Organizations ◽  
Genetics Research ◽  
Biomedical Journals ◽  
Disease Advocacy

scholarly journals How disease advocacy organizations participate in clinical research: a survey of genetic organizations

2012 ◽  
Vol 14 (2) ◽  
pp. 223-228 ◽  
Author(s):  
David C. Landy ◽  
Margaret A. Brinich ◽  
Mary Ellen Colten ◽  
Elizabeth J. Horn ◽  
Sharon F. Terry ◽  
...  
Keyword(s):  
Clinical Research ◽  
Advocacy Organizations ◽  
Disease Advocacy

scholarly journals Disease Politics and Medical Research Funding

2012 ◽  
Vol 77 (5) ◽  
pp. 780-803 ◽  
Author(s):  
Rachel Kahn Best
Keyword(s):  
Interest Groups ◽  
Medical Research ◽  
Advocacy Organizations ◽  
Research Priority ◽  
Direct Benefits ◽  
Political Effects ◽  
Disease Advocacy ◽  
Aggregate Effects ◽  
Using Data ◽  
Policy Arenas

In the 1980s and 1990s, single-disease interest groups emerged as an influential force in U.S. politics. This article explores their effects on federal medical research priority-setting. Previous studies of advocacy organizations’ political effects focused narrowly on direct benefits for constituents. Using data on 53 diseases over 19 years, I find that in addition to securing direct benefits, advocacy organizations have aggregate effects and can systemically change the culture of policy arenas. Disease advocacy reshaped funding distributions, changed the perceived beneficiaries of policies, promoted metrics for commensuration, and made cultural categories of worth increasingly relevant to policymaking.

scholarly journals Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research

2016 ◽  
Vol 14 (4) ◽  
pp. 314-318 ◽  
Author(s):  
Kelly A. Edwards ◽  
Sharon F. Terry ◽  
Dana Gold ◽  
Elizabeth J. Horn ◽  
Mary Schwartz ◽  
...  
Keyword(s):  
Translational Research ◽  
Advocacy Organizations ◽  
Disease Advocacy

Publicity Over Prevention, Cures Over Care

2019 ◽  
pp. 131-160
Author(s):  
Rachel Kahn Best
Keyword(s):  
Health Policy ◽  
Treatment Access ◽  
Access To Treatment ◽  
Advocacy Organizations ◽  
Corporate Influence ◽  
Prevention And Treatment ◽  
Disease Advocacy ◽  
Corporate Interests ◽  
Over Time

Focusing on diseases shapes the types of goals advocacy organizations pursue and the types of laws Congress passes. Over time, the pressure to adopt goals that fit neatly within disease categories, corporate influence, and the strategic avoidance of controversy encouraged disease advocates to prioritize awareness and research over prevention and access to treatment. This creates a health policy portfolio that subsidizes corporate interests, ignores collective risks, fails to challenge inequalities, and may actually make people less healthy by encouraging overtreatment. Yet while only a small proportion of organizations focus on prevention and treatment access, the phenomenal growth of disease advocacy means that large numbers of organizations continue to pursue the latter goals. Narrow goals outnumber broader goals but do not displace them.

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