Download Achieving Justice in Genomic Translation: Re-Thinking the by Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne PDF
By Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad
This ebook explores implicit offerings made via researchers, coverage makers, and funders relating to who advantages from society's funding in health and wellbeing learn. The authors concentration in particular on genetic examine and view even if such examine has a tendency to lessen or exacerbate current overall healthiness disparities. utilizing case examples to demonstrate the problems, the authors hint the trail of genetics examine from discovery, via improvement and supply, to wellbeing and fitness results. issues contain breast melanoma screening and therapy, autism study, pharmacogenetics, prenatal trying out, infant screening, and adolescence suicide prevention. each one bankruptcy emphasizes the societal context of genetic examine and illustrates how technological know-how could switch if awareness have been paid to the wishes of marginalized populations. Written through specialists in genetics, healthiness, and philosophy, this e-book argues that the clinical firm has a accountability to answer neighborhood must guarantee that learn ideas in achieving 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
1995). Revamping the Orphan Drug Act: potential impact on the world pharmaceutical market. Law Policy Int Bus. 26(2):523–561. Kaiser Health News. (2008). High prescription drug prices lead to scrutiny of medication dosage levels. referrer=search. Updated March 17, 2008. Accessed November 10, 2010. Korn D. (2000). Conflicts of interest in biomedical research. JAMA. 284(17): 2234–2237. Malaria R&D Alliance. (2005). Malaria research and development: An assessment of global investment. pdf. Accessed December 29, 2010.
Chapter 10, by Wylie Burke and Nancy Press, focuses on genetic testing for breast cancer and questions whether this now widely available testing has had the hoped-for health outcomes. They point to disparities in access to the testing as well as limited relevance of BRCA testing for most women who experience breast cancer. They take up the more general question of what a just genomic approach to health disparities might look like when it prioritizes the needs of medically underserved populations.
With ongoing therapy, individuals with this disorder can live relatively normal lives into and throughout adulthood. The astronomical costs generally are paid by the health plan—assuming that the patient is lucky enough to have private health care coverage or a generous Medicaid plan. Many families struggling to deal with Gaucher disease have been forced to “spend down” their assets to qualify for Medicaid (Kaiser Health News 2008). Faced with the negative public-relations impact of bankrupting many patents, Genzyme, the manufacturer of Ceredase and Cerezyme, ultimately initiated a program to provide the medication to those who could not afford it.