Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- “We need to work together to expand access to genetic testing” http://bit.ly/23NPFD (from Jack Lord of @Navigenics)
- RT @nanopore: $250 million GE Healthcare fund highlighting importance of preventative medical technologies. Smart fund. http://bit.ly/bHnRv
- RT @GenCounsNews: Interesting article about the availability of genetic testing in Israel, and the laws surrounding it: http://bit.ly/2Cg4SP
- RT @lukejostins: Summing up the 1st day of #ASHG2009: Rare Variants, & the 1000 Genomes Project « Genetic Inference http://bit.ly/uSHum
- Kaiser’s Massive Genetic Database Leverages Its Patient Population (But It’s A One Way Street): http://bit.ly/vOKK6
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We need to work together to expand access to genetic testing
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Jonathan T. Lord, Navigenics, Inc.
At Navigenics, we know that the future of health care rests in preventing disease, not just treating it. And we know that personalized genomics will play a big part in transforming medicine from a “sick care” system to a true health care system, allowing doctors to tailor prevention plans and treatments to meet patients’ needs.
But in order to expand access to personalized genetic testing, we must first address the most pressing question – where and how to start?
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Kaiser’s Massive Genetic Database Leverages Its Patient Population (But It’s A One Way Street)
This week MIT’s Technology Review featured a story about Kaiser Permanente and its plans to use its Northern California patients to construct an enormous genetic database. The acronym-unfriendly Research Program on Genes, Environment, & Health, or RPGEH is funded in large part by a $25 million NIH research grant courtesy of February’s stimulus bill. The program will genotype 100,000 patients using SNP array technology from Affymetrix. If all goes well, the project will expand to as many as 500,000 patients by 2013.
What makes the RPGEH proposal so exciting, from a research perspective, is not just the 700,000 SNPs that will be genotyped for 100,000 patients, although that alone would represent one of the largest genetic research databases currently in existence. The real value lies in the marrying of genetic information with robust medical, environmental and other phenotypic data that Kaiser already maintains as a health care provider. From the RPGEH’s official description:
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The Hidden Legal Barriers to Scientific Research
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Thinh H. Nguyen, Creative Commons Counsel for Science Commons.
When thinking about the legal issues associated with genomics, many people, particularly lawyers, tend to focus on patent issues. While there are legitimate concerns about patents, there is a growing body of sociological research to suggest that in the vast majority of cases, bench science is not impeded by fear of patent lawsuits, but rather by far more mundane legal and cultural barriers.
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Bench to Market: Understanding the Language
As the first installment of our Bench to Market series of posts, we provide a glossary of certain terms that an entrepreneur is likely to hear in the course of bringing a venture to market. This glossary assumes that many terms commonly used in legal circles will be new to the entrepreneur. The defined terms in this initial list relate primarily to the choice of legal entities that are available to the entrepreneur for development and operation of a business venture. As the series continues, this list will be expanded to include additional terms discussed in subsequent posts.
The next generation is ……. in high school.
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Dana Waring and Ting Wu, co-founders of the Personal Genetics Education Project.
Personal genetics is just that, it’s personal. Regardless of how many laws or societal norms are in play, any decision an individual makes about knowing or using personal genetic information will ultimately be a personal one, informed by the richness of that individual’s own history and circumstances. Therefore, in order for personal genetics to be adopted in a fair and ethical way, broad-based education is critical. We argue here that the education of high school students may be our most important responsibility and, coincidentally, the most far-reaching, cost-effective, and timely approach for achieving worldwide understanding of the benefits, risks, and ethics of personal genetics.
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Biotech Patents under Attack from Two More Angles
Two developments this month have underscored the breadth of dissatisfaction with the current state of biotechnology patenting, even as the court weighs a summary judgment motion in the pending ACLU-sponsored litigation against Myriad Genetics’ breast cancer gene patents. First, on October 2, 2009, the American Medical Association and four other medical organizations interested in genetic medicine filed an amicus brief in Bilski v. Kappos, which is now before the Supreme Court. In a decision in Bilski late last year, the Federal Circuit rejected a patent on a method of hedging in a commodities market because it was a nontransformative process consisting solely of mental steps. The Federal Circuit promulgated what has come to be known as the machine-or-transformation test, which limits patentable subject matter to processes that are either tied to a particular machine or transform the state of matter. The test has been attacked by various biotechnology and pharmaceutical interests because of its perceived limiting effect on patenting diagnostic techniques and tests.
Potential increased health disparities related to genomic medicine
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by The Board of Directors of the National Society of Genetic Counselors.
There are many existing barriers to accessing healthcare. However, as the advances in genetic science and technologies are integrated into mainstream medicine, the gap between those who can afford and those who cannot afford healthcare will evolve into a new form of health disparities. There will always be those people who can afford the latest in medical technology and will have access to a $1000 genome test and genetic counseling to help interpret the results and fully integrate the information into their personalized medical plan.
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The balance of experiment and theory is shifting in genomics; this matters for ELSI
This commentary in the Genomics Law Report’s ongoing series What ELSI is New? is contributed by Robert Cook-Deegan, Duke University Institute for Genome Sciences & Policy.
I am teaching Darwin this semester with a colleague from the English Department. It’s a real gas to go back to the roots of modern biology and see the shift from pure field observation and categorization to theoretically driven argument. Since Warren Weaver coined the term and then primed the pump for molecular biology in 1938 at the Rockefeller Foundation, biology has become a much more experimental science. Many lineages of embryology, genetics, and other parts of biology always were experimental, but after World War II, molecular approaches became dominant, driven in no small part by a succession of new technologies: ultracentrifuges, radio-isotopes incorporated into macromolecules, protein sequencing and synthesis, recombinant DNA, and nucleic acid sequencing. Sequencing really caught fire in the 1980s, and joined forces with the broader revolution in computing and communication using the Internet and computational firepower following Gordon Moore’s trajectory of faster, cheaper, and smaller computing power.
Many other parts of biology are changing too, and this is not a claim of genomic exceptionalism. It is merely a claim that things are changing, and fast, not that they are only changing in genomics (just think of stem cells). As I think about “what’s new,” I find myself drawn to one hugely important changethe log-a-year improvements in sequencing technology that suggest we’ll be generating one whale of a lot of DNA sequence data, and not just about Homo sapiens (I hope). I don’t pretend to know what that means. But I am drawn to two lines of research that seem to give us a glimpse of some major changes ahead that we would do well to be thinking about. I don’t quite know what to say about them, except to say that my antennae are quivering with a sense that they are really important.
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The Weekly Twitter Roundup
Each week there are a number of stories and developments that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. Here’s a recap of what I was Tweeting this week @genomicslawyer:
- What ELSI is New? “Personalized Medicine in the Web 2.0 Era” http://bit.ly/PJZHh (from @Berci)
- To Share or Not to Share: That is the Question http://bit.ly/1Ziz9j Should clinically relevant genetic research be returned to participants?
- Detailed analysis of the Human Genetics Commission’s draft principles for DTC genetic testing: http://bit.ly/pab7b
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