In this final post of their three-part series, lawyers Daniel Vorhaus and Lawrence Moore of the superb blog Genomics Law Report analyse the legal repercussions of a personal genomics company going bankrupt. In part one of the series Vorhaus and Moore analysed the privacy policies of two representative personal genomics companies, while part two was a detailed examination of the complex legal issues surrounding the treatment of customer genetic data in the event of company bankruptcy.
In this final installment, Vorhaus and Moore bring it all together to explain the implications for personal…
Kevin Davies from Bio-IT World has two interviews up today relevant to new DNA sequencing technologies.
Firstly, there's an excellent interview with Clive Brown, vice president of development and informatics for Oxford Nanopore Technologies - one of the most promising contenders in the rapidly evolving third-generation DNA sequencing market. Brown is renowned for his plain-speaking approach (in the article he's described as "the most honest guy in all of next-gen sequencing", a quote originating from David Dooling), and that shows here in his blunt comments on the recent Helicos genome…
Mark Henderson's interview with Anne Wojcicki, co-founder of personal genomics company 23andMe, is well worth a read. The big story is this: Wojcicki has floated the possibility of offering discounted genome scans to clinicians "to teach them to interpret genomic information that is now readily available to their patients".
Wojcicki explains:
"Clearly we need to engage with physicians to help them to understand this information," she said. "One of the things we've talked about is we'd love to get physicians comfortable with their own genomes first, have them understand what does it mean,…
In the second of three guest posts, lawyers Daniel Vorhaus and Lawrence Moore of the superb blog Genomics Law Report discuss the implications for personal genomics customers if their provider goes bankrupt. In part one of the series (posted yesterday), Vorhaus and Moore dissected the implications of the privacy policies of two personal genomics companies, TruGenetics and 23andMe.
Today's post is an in-depth analysis of the complex legal issues surrounding the treatment of genetic information gathered by a now-bankrupt personal genomics company. For those who get a little lost in the legal…
In this series of three guest posts, lawyers Daniel Vorhaus and Lawrence Moore of the excellent Genomics Law Report provide insight into the intriguing question of what happens to customers' genetic data in the event that a personal genomics company goes out of business. Part II and III of this series will be posted over the next two days.
What Happens if
a DTC Genomics Company Goes Belly Up?
Direct-to-consumer (DTC) genomics
companies are not immune to the current recession. When TruGenetics,
a new player in the DTC genomics space, announced in June that it would
be handing out 10,000…
My esteemed blogging colleague Ginny Hughes will be presenting at next week's Cold Spring Harbor Personal Genomes meeting (which I, sadly, will not be attending) on genetic testing for psychiatric diseases. As part of preparing for this she'd like to get a sense of the level of interest in this type of testing.
If you have 30 seconds to spare, please help her out by filling in this very brief survey.
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David Clark at Genomics Law Report has a thorough dissection of the recent and highly restrictive laws passed in Germany governing access to genetic testing. You should read the whole thing to get a sense of what happens when governments grab the wrong end of the regulation stick, but here's the crucial paragraph:
The German Act [...] adopts an extremely protective, even fearful, view of genetic information as something so dangerous and private that the generation and disclosure of genomic data must be mediated solely through specially trained physicians, accompanied by psychological and…
The NY Times has an article entitled "Buyer beware of home DNA tests" that adopts the paternalistic party line of the medical establishment: taking DNA tests without a doctor's advice is hazardous to your health.
Remarkably, the article acknowledges that qualified genetic counsellors are few and far between and that "most practicing physicians lack the knowledge and training in genetics to interpret [DNA tests] properly", and yet still suggests that customers should "take the findings to a qualified expert".
Begging the question: which qualified expert should customers be taking their test…
Sequencing giant Illumina has announced that it has delivered its first commercial personal genome sequence. The sequence was generated by the genome sequencing service launched by Illumina back in June, and was delivered in collaboration with new personal genomics company Pathway Genomics.
Illumina's genome sequencing service costs $48,000, and its first customer was entrepreneur Hermann Hauser. Bio-IT World summarises details of the sequencing itself:
Illumina completed the sequence at its CLIA-certified laboratory, producing more than 110 billion base calls, good for 30X coverage of the…
Peter Aldhous has a great piece of detective work in New Scientist, which has revealed a bizarre and sporadic glitch in the online software provided by personal genomics company deCODEme to allow customers to view their genetic data.
The glitch appears to be restricted to the display of data from the mitochondrial genome (a piece of DNA with a special fascination for genetic genealogists, since it is inherited almost exclusively along the maternal line). On several separate occasions the deCODEme browser presented Aldhous with a mitochondrial profile that was spectacularly wrong, differing…
Complete Genomics is finally back on the road towards fulfilling its promises of $5000 human genome sequences, after delays in obtaining funding for a massive new facility pushed back its plans by six months. The $45 million in funding it announced this week will be sufficient to build the new Silicon Valley facility, which the company claims will have the capacity to sequence a staggering 10,000 genomes over the course of 2010.
Complete Genomics is an unusual creature in the second-generation sequencing menagerie: instead of aiming to generate revenue by selling machines to researchers and…
In the comments to a previous post defending big genetics, Andro Hsu relates an anecdote that warrants repeating:
IIRC, at the December NIH/CDC meeting Francis Collins suggested that the way to get to the bottom of the missing heritability, the common disease common variant hypothesis, gene-gene and gene-environment interactions, etc. etc. is to run a population-wide, 20-year longitudinal study in which genome-wide data and detailed environmental and behavioral minutiae were tracked for 100,000 participants.
The follow-up commenters starting with John Ioannidis each upped the sample size by…
Dan Vorhaus has a great post in Genomics Law Report outlining recommendations made by a recent NIH-CDC workshop on the scientific foundations of personal genomics. The workshop included key stake-holders from academia, policy advisory groups and the personal genomics industry.
The recommendations from the workshop seemed on-target to me, and I was particularly pleased to see explicit recognition of the notion that consumer genomics may provide personal utility even if its clinical utility is marginal - in other words, that genetic information can still have a positive effect on a person's…
Over at Gene Expression, p-ter has a post up defending the "big genetics" approach, noting that large-scale hypothesis-free genetics studies have consistently yielded important results for follow-up detailed fine-scale studies.
It's a sound argument. I've argued in the past that many of the fears expressed about Big Genetics are overblown:
Will Big Genetics eventually swallow the entire field, as some critics of the Human Genome Project argued towards the end of the last millennium? I'd argue that this is unlikely, and that in fact the Big Genetics approach carries within it the seeds of…
A colleague just pointed me to The Human Genre Project, a growing collection of short writing (poems, short stories) assembled into the set of human chromosomes
The quality is uneven, but some are genuinely moving, some are cute, and others convey the challenges and uncertainties of our genetic future.
For the literarily inclined: I note that chromosome 22 is yet to find an occupant, and anyone can contribute.
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A useful reminder for evolutionary biologists and science journalists, posted to the Evoldir list by Joel Parker:
I have noticed many evolutionary biologists making an embarrassing mistake of falsely attributing the first use of the tree analogy to Darwin. This has occurred in numerous documentaries and on websites which I will pass on naming here. Ironically, the earliest use of the tree analogy diagram to depict evolution was published in the year of Darwin's birth (1809) by Lamarck in his book Philosophie Zoologique (see pg 463, http://tinyurl.com/knt7vr). Lamarck even uses botanical…
Mihaescu, R., van Hoek, M., Sijbrands, E., Uitterlinden, A., Witteman, J., Hofman, A., van Duijn, C., & Janssens, A. (2009). Evaluation of risk prediction updates from commercial genome-wide scans Genetics in Medicine, 11 (8), 588-594 DOI: 10.1097/GIM.0b013e3181b13a4f
Caroline Wright from the Public Health Genomics Foundation has a concise post describing the results from a recent paper in Genetic Medicine. The paper evaluates the probability that personal genomics customers will find that their predicted risk of a common disease changes significantly over time as their genetic data…
Most of the posts I've written recently have involved next-generation DNA sequencing in one way or another, which may have left some readers scratching their heads - keeping track of the different technologies, how they work, and their strengths and weaknesses is a challenge even for those immersed in this fast-moving field.
Fortunately, help is at hand for readers who don't know their SOLiD from their 454. Luke Jostins (who wrote a guest post here on Genetic Future a while back) has a great new post up on his blog Genetic Inference providing some background on second-generation sequencing.…
A tweet from personal genomics company 23andMe (see screenshot below) sparked my interest:
I knew 23andMe had been successful in recruiting Parkinsons patients as part of its targeted drive, and the 337 unspecified "patients" are the product of their broader recruitment drive for diseased genomes, Research Revolution (which I've dissected in a previous post) - but the athletes were news to me.
A little Google-trawling revealed (see page 15 of this PDF article from Palo Alto Online) that 23andMe offered free genome scans to all of the participants in the currently ongoing Palo Alto Senior…
I've just discovered a very promising new blog in the genomics sphere (well, technically it's a newly relaunched blog) run by a group at the University of Birmingham.
Two posts by Nick Loman are of immediate interest to readers here. Firstly, I highly recommend Nick's thorough dissection of accusations made by Applied Biosystems' Kevin McKernan in a recent submission to a UK House of Lords enquiry, which include the claim that the Sanger Institute's adoption of technology from AB competitor Illumina were driven by bias. Here's a key paragraph, but if you're interested in the competition in…