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)
Type
Specialized Center (P50)
Project #
5P50HG003391-09
Application #
8661777
Study Section
Special Emphasis Panel (ZHG1)
Project Start
Project End
Budget Start
Budget End
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
Michie, Marsha; Kraft, Stephanie A; Minear, Mollie A et al. (2016) Informed decision-making about prenatal cfDNA screening: An assessment of written materials. Ethics Med Public Health 2:362-371
Meredith, Stephanie; Kaposy, Christopher; Miller, Victoria J et al. (2016) Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States. Prenat Diagn 36:714-9
Cook-Deegan, Robert; Vishnubhakat, Saurabh; Bubela, Tania (2016) The mouse that trolled (again). J Law Biosci 3:185-191
Bubela, Tania; Cook-Deegan, Robert (2015) Keeping score, strengthening policy and fighting bad actors over access to research tools. Nat Biotechnol 33:143-7
Angrist, Misha (2015) Start me up: ways to encourage sharing of genomic information with research participants. Nat Rev Genet 16:435-6
Allyse, Megan; Chandrasekharan, Subhashini (2015) Too much, too soon?: Commercial provision of noninvasive prenatal screening for subchromosomal abnormalities and beyond. Genet Med 17:958-61
Burke, Wylie; Appelbaum, Paul; Dame, Lauren et al. (2015) The translational potential of research on the ethical, legal, and social implications of genomics. Genet Med 17:12-20
Minear, Mollie A; Alessi, Stephanie; Allyse, Megan et al. (2015) Noninvasive Prenatal Genetic Testing: Current and Emerging Ethical, Legal, and Social Issues. Annu Rev Genomics Hum Genet 16:369-98
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
Contreras, Jorge L; Rai, Arti K; Torrance, Andrew W (2015) Intellectual property issues and synthetic biology standards. Nat Biotechnol 33:24-5

Showing the most recent 10 out of 88 publications