By Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad
This e-book explores implicit offerings made by way of researchers, coverage makers, and funders relating to who merits from society's funding in health and wellbeing learn. The authors concentration in particular on genetic study and consider even if such examine has a tendency to lessen or exacerbate current well-being disparities. utilizing case examples to demonstrate the problems, the authors hint the trail of genetics learn from discovery, via improvement and supply, to overall healthiness results. subject matters contain breast melanoma screening and therapy, autism study, pharmacogenetics, prenatal trying out, child screening, and formative years suicide prevention. every one bankruptcy emphasizes the societal context of genetic learn and illustrates how technological know-how may switch if awareness have been paid to the wishes of marginalized populations. Written by way of specialists in genetics, wellbeing and fitness, and philosophy, this booklet argues that the medical company has a accountability to answer group must guarantee that learn thoughts in attaining a lot wanted wellbeing and fitness affects.
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Additional resources for Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit
Cook-Deegan R, Chan C, Johnson A. (2000). World Survey of Funding for Genomics Research: Final Report to the Global Forum for Health Research and the World Health Organization. edu/class/siw198q/websites/genomics/finalrpt. htm. Updated September 25, 2000. Accessed November 10, 2010. Cuatrecases P. (2006). Drug discovery in jeopardy. J Clin Invest. 116(11):2837–2842. DiMasi JA, Hansen RW, Grabowski HG. (2003). The price of innovation: new estimates of drug development costs. J Health Econ. 22(2):151–185.
An example of the public–private partnership model is the Global Fund to Fight AIDS, Tuberculosis and Malaria. Established in 2002, the Global Fund is a collaboration of private-sector corporations, nongovernmental organizations, and governments. It attracts, manages, and disburses resources to fight AIDS, TB, and malaria and has become the primary source of funding for such research (Global Fund 2010). 26 A C H I E V I N G J U S T I C E I N G E N O M I C T R A N S L AT I O N In addition to the large foundations and public–private partnerships, patientand disease-focused advocates may play a role in molding the research agenda and influencing funding for research.
While organizations such as the Gates Foundation have begun to address the 10/90 gap, the continuing inequity drives concerns that populations of developing and economically struggling countries Social, Political, and Economic Underpinnings of Biomedical Research 37 are not receiving full and fair benefits of research and scientific discovery (Participants 2002). In conclusion, underserved populations in the United States and around the world face a challenging future with respect to access to the fruits of scientific progress, including those derived from genetics research.
Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit by Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad