Robinson Bradshaw

Month: August 2009

The Wild, Wild East of DTC Genomics and the Need for Meaningful Self-Regulation

Earlier this month CNN reported on the launch of a new program by the Chongqing Children’s Palace (CCP), in Chongqing, China, “that uses DNA testing to identify genetic gifts and predict the future.” In a story seemingly more appropriate for the Onion than for CNN, the article reports that Chinese scientists at the CCP are […]

Crowd-Sourcing vs. Open-Sourcing in Consumer Genomics

The New York Times yesterday described the emerging phenomenon of utilizing patient and online communities to jumpstart scientific research. In a previous post (Genomic Research Goes DTC) I discussed this trend, as well as a number of the legal uncertainties surrounding this new research model, particularly in the case of genomic research conducted by private […]

Will Funding Break Through the Bioinformatics Bottleneck?

Earlier this month, the NIH announced the renewal of a grant program that awards up to $275,000 over two years to academic institutes, small businesses, non-profits and other groups, to support research aimed at developing new ways of managing, manipulating and interpreting genomic and other biological data. But the utility and necessity of such grants […]

10,000 Free Genome Scans Too Good to be Tru? TruGenetics Announces Fundraising Difficulties

It was just over two months ago that TruGenetics splashed onto the DTC genomics scene with a promise of free genome scans for its first 10,000 participants. Both here and over at Genetic Future, questions were raised about the TruGenetics business model.  Based on the email that I just received from the company, it appears […]

Duke Finds a Second Alzheimer’s Gene—What Does It Mean?

The recent discovery of a gene linked to Alzheimer’s disease provides a timely context for revisiting the significance of gene patents. Researchers at Duke University Medical Center recently announced that they have identified a second gene (called TOMM40) associated with an increased risk of late-onset Alzheimer’s, which affects people over the age of 65. A […]

The Scientific Foundation for Personal Genomics: Recommendations from the Joint NIH-CDC Workshop

Last December, some of the true heavyweights in the field of personal genomics convened for a two-day workshop cosponsored by the CDC and NIH to review the science and implementation of personal genomics. Participants included scientific luminaries (e.g., Francis Collins, George Church and Bob Green), personal genomics companies (e.g., 23andMe, Knome, Navigenics, deCODE Genetics and […]

Informed Consent for Pediatric Biobanking

What rules should govern the participation of children in large-scale genomic biobanking research? That’s the question that David Gurwitz, Isabel Fortier, Jeantine E. Lunshof and Bartha Maria Knoppers tackle in a policy forum piece in the current issue of Science. The Importance of Open Consent In considering the use of DNA samples and phenotypic data […]

Is the ACCP’s Call for Greater Governmental Regulation of DTC Genetics Premature?

Another player has entered the debate over direct-to-consumer (DTC) genetic testing and come down on the side of greater regulation. In a position statement authored by Barbara Ameer and Norberto Krivoy (pdf), the American College of Clinical Pharmacology (ACCP) proposes greater regulation of laboratory genetic tests generally, DTC advertising of genetic tests, and communication to […]

Regulating Advertising Practices of DTC Genetic Testing Companies?

The Genetics & Public Policy Center (GPPC) has commissioned a 50 state survey of “laws that could potentially be used to protect consumers against unfair or deceptive trade practices by DTC genetic testing companies.”  You can see the full survey here (pdf) or you can jump directly to the conclusion: “The survey reveals that while all […]

Whole-Genome Sequencing and Gene Patents Coexist (For Now)

In a recent post, John Conley analyzed the ACLU’s lawsuit challenging Myriad Genetics’ patents on the BRCA-1 and BRCA-2 “breast and ovarian cancer susceptibility” genes. Several readers responded with the same general inquiry: if an individual undergoes a whole-genome sequence analysis, will the individual (or the company providing the sequence) be required to pay royalties to […]