Since 2007, much has been made of the emergence of personal genomics. Some in the biomedical science community have come to see the opportunity for individuals to gain access to their own genomic information as potentially positive. There has also been a groundswell of criticism. The sturm und drang has tended to focus on personal genomics companies such as 23andMe, Navigenics and deCODEme, each of which charges several hundred dollars or more for individual genome scans of 600,000 to 2 million variants. These firms' tests, the critics say, may not be analytically valid, are not clinically valid, are not actionable, will lead to the """"""""wrong"""""""" actions, will lead to unnecessary anxiety, will overwhelm physicians with data, are frivolous manifestations of more important science, will drain resources from more important medical needs, and will reify deterministic notions of race and ethnic identity.' In each of these criticisms, there is the suggestion that by charging significant fees for their services, personal genomics companies are in some way exploiting their customers. At a 2008 meeting of the Secretary's Advisory Committee on Genetics, Health and Society, a committee member asked representatives from five personal genomics companies, """"""""[W]ould you sacrifice [the] fiscal bottom line of your company in order to achieve the [goal] that you say that you have, which is improving the health care of all people?"""""""" One wonders: Has the presence of commerce made it difficult to make objective assessments of the mechanisms used to generate, interpret and share personal genomic and related health information? What are the noncommercial forces driving personal genomics, both technological and social? How are those without explicit profit motives developing, disseminating and benefiting (and/or incurring harm) from personal genomic tools and how are those mechanisms distinct?

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003391-09
Application #
8661777
Study Section
Special Emphasis Panel (ZHG1)
Project Start
Project End
Budget Start
2014-04-01
Budget End
2015-03-31
Support Year
9
Fiscal Year
2014
Total Cost
Indirect Cost
Name
Duke University
Department
Type
DUNS #
City
Durham
State
NC
Country
United States
Zip Code
27705
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Bubela, Tania; Vishnubhakat, Saurabh; Cook-Deegan, Robert (2015) The Mouse That Trolled: The Long and Tortuous History of a Gene Mutation Patent That Became an Expensive Impediment to Alzheimer's Research. J Law Biosci 2:213-262
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Fernandez, Conrad V; O'Rourke, P Pearl; Beskow, Laura M (2015) Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families. J Law Med Ethics 43:514-22

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