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.[82] There has also been a groundswell of criticism.[83] 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,[84] are frivolous manifestations of more important science,[85] will drain resources from more important medical needs,[86] and will reify deterministic notions of race and ethnic identity.[87] 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?""""""""[88] 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? This Project will draw on oral history interviews, archival records, legal documents (e.g., licenses and material transfer agreements) and traditional journalistic, historical and ethnographic approaches to analyze the origins and recent histories of five manifestations of noncommercial personal genomics technology and interpretation.
| Cook-Deegan, Robert; Ankeny, Rachel A; Maxson Jones, Kathryn (2017) Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet 18:389-415 |
| Cook-Deegan, Robert; McGuire, Amy L (2017) Moving beyond Bermuda: sharing data to build a medical information commons. Genome Res 27:897-901 |
| Thorogood, Adrian; Cook-Deegan, Robert; Knoppers, Bartha Maria (2017) Public variant databases: liability? Genet Med 19:838-841 |
| Cook-Deegan, Robert; Vishnubhakat, Saurabh; Bubela, Tania (2016) The mouse that trolled (again). J Law Biosci 3:185-191 |
| 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 |
| Beskow, Laura M; O'Rourke, P Pearl (2015) Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles. J Law Med Ethics 43:502-13 |
| 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 |
| Minear, Mollie A; Lewis, Celine; Pradhan, Subarna et al. (2015) Global perspectives on clinical adoption of NIPT. Prenat Diagn 35:959-67 |
| Angrist, Misha (2015) Start me up: ways to encourage sharing of genomic information with research participants. Nat Rev Genet 16:435-6 |
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