By Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad
This booklet explores implicit offerings made by means of researchers, coverage makers, and funders concerning who advantages from society's funding in future health study. The authors concentration in particular on genetic learn and think about no matter if such study has a tendency to lessen or exacerbate latest future health disparities. utilizing case examples to demonstrate the problems, the authors hint the trail of genetics examine from discovery, via improvement and supply, to healthiness results. subject matters contain breast melanoma screening and therapy, autism learn, pharmacogenetics, prenatal trying out, infant screening, and formative years suicide prevention. every one bankruptcy emphasizes the societal context of genetic learn and illustrates how technological know-how may perhaps switch if awareness have been paid to the wishes of marginalized populations. Written by means of specialists in genetics, wellbeing and fitness, and philosophy, this publication argues that the medical company has a accountability to answer group must guarantee that learn recommendations in achieving a lot wanted healthiness affects.
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Additional info for Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit
16(1):39–57. Khoury M, Gwinn M,Yoon P, Dowling N, Moore C, Bradley L. (2007). The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med. 9(10):665–674. [NIH] National Institutes of Health. (2001). NIH Policy and Guidelines on The Inclusion of Women and Minorities as Subjects in Clinical Research – Amended, October, 2001. gov/grants/funding/women_min/guidelines_amended_10_2001.
In contrast, the proportion of research that is paid for by pharmaceutical companies, medical device manufacturers, and other private-sector industry has increased at a remarkable rate over the same period. 4 billion in research funding—roughly 20% of total research funding. 3 billion on research, more than twice the amount spent by the federal government (Rampton and Stauber 2002). In sum, although government funding of research has incrementally increased over time, private funding has increased exponentially.
Unless a drug is projected to be a clear winner in the market, developers are reluctant to incur the research and development costs, plus the expense of the lengthy approval process. Contemporary estimates of the cost range between $543 and $803 million [in 2000 dollars] (DiMasi, Hansen, and Grabowski 2003). In addition to much-delayed return on the biomedical/pharmaceutical firm’s investment, the testing and approval process also regularly consumes half or more of the period of patent protection.
Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit by Wylie Burke, Kelly A. Edwards, Sara Goering, Suzanne Holland, Susan Brown Trinidad