transparency
oracknows | June 28, 2017Before I delve into the next topic, I can't help but congratulate John Oliver yet again for his excellent deconstruction of the antivaccine movement on Sunday night. As I noted on Tuesday, it clearly hit the mark, given how angry one antivax blogger got over it. As of yesterday, over at that wretched hive of scum and quackery, that antivaccine crank blog known as Age of Autism, resident "Media Editor" Anne Dachel was still sputtering over Oliver's segment, labeling it Oliver's vulgar treatment of vaccine-injured and their families and posting a line about how allegedly "mocking and berating…
cmonforton | March 17, 2016A funny thing happened this week when President Obama’s regulatory czar, Howard Shelanski, was called to testify before Congress. The subject of the hearing: transparency at Shelanski’s Office of Information and Regulatory Affairs (OIRA). On the eve of the hearing, OIRA tried to fool us by pretending to be transparent.
For the last several months, I’ve been routinely checking OIRA’s website for notations about meetings the staff has held with individuals or organizations which have an interest in particular pending OSHA regulations. I knew meetings with particular groups had taken place, but…
cmonforton | March 4, 2015It’s a rare thing on Capitol Hill when a member of the Administration is on the hot seat from both sides of the aisle. But that’s what happened on Tuesday when President Obama’s regulatory czar, Howard Shelanski, JD, PhD, testified at a joint hearing of two subcommittees of the House Committee on Oversight & Government Reform.
The Republican Chairman Mark Meadows (R-NC) and Ranking Member Gerry Connolly (D-VA) and other subcommittee members, peppered him with questions about OIRA’s lack of transparency in numerous arenas. Their motivations were different, but they were equally tough in…
cmonforton | August 28, 2013President Obama's regulatory czar, Howard Shelanski, has been on the job for a month. During his confirmation hearing Shelanski expressed his commitment to transparency. He suggested it was one of his key priorities within the White House's Office of Information and Regulatory Affairs (OIRA) which is housed within the Office of Management and Budget (OMB). As noted, however, by CPR scholar Sidney Shapiro and his colleague James Goodwin, OIRA has a long history of secrecy with respect to its role in the centralized review of agencies' regulatory activities. Many in the open-government…
lborkowski | February 15, 2013One of the less-noticed provisions of the Affordable Care Act is a requirement that pharmaceutical companies report to the Department of Health and Human Services the gifts and other payments they give to doctors and teaching hospitals -- and that HHS in turn make that information available to the public. (It's sometimes referred to as the "Physician Payment Sunshine Act," after legislation previously introduced in Congress by Senator Chuck Grassley.) Earlier this month, HHS released its final regulations to implement this provision. Beginning August 1, 2013, drug and device companies will…
lborkowski | July 4, 2012While the adoption of the Declaration of Independence is the most important anniversary that the US celebrates on July 4th, this date is also the anniversary of the Freedom of Information Act. President Johnson signed the FOIA on July 4, 1966 – although he apparently wasn’t happy about it, and refused to hold a signing ceremony.
The National Security Archive -- which is not a government agency, but a nonprofit based at the George Washington University (where I work) -- looked back at the history of FOIA on its 40th anniversary in 2006, and reported:
Documents from the LBJ Library show that…
lborkowski | May 11, 2011Good data isn't just important to researchers; it's also essential for people who want to participate in the governmental processes that affect our environment. The US government makes a lot of environmental data available to the public and provides many opportunities for public participation, but both the information and the engagement opportunities need to improve if we're going to effectively address the many threats to our health, from air pollution to climate change. The nonprofit OMB Watch has just released an action plan that contains many specific recommendations for doing exactly…
sb admin | January 7, 2011As part of his Gene Week celebration over at Forbes, Matthew Herper has a provocative post titled "Why you can't have your $1000 genome". In this post I'll explain why, while Herper's pessimism is absolutely justified for genomes produced in a medical setting, I'm confident that I'll be obtaining my own near-$1000 genome in the not-too-distant future.
Matt's underlying argument is that while sequencing costs will continue to drop, obtaining a complete genome sequence that is sufficiently accurate for medical interpretation will require additional expenses (increased sequence coverage to…
dgmacarthur | January 7, 2011As part of his Gene Week celebration over at Forbes, Matthew Herper has a provocative post titled "Why you can't have your $1000 genome". In this post I'll explain why, while Herper's pessimism is absolutely justified for genomes produced in a medical setting, I'm confident that I'll be obtaining my own near-$1000 genome in the not-too-distant future.
Matt's underlying argument is that while sequencing costs will continue to drop, obtaining a complete genome sequence that is sufficiently accurate for medical interpretation will require additional expenses (increased sequence coverage to…
sb admin | December 15, 2010Late last week I stumbled across a press release with an attention-grabbing headline ("The Causes of Common Diseases are Not Genetic Concludes a New Analysis") linking to a lengthy blog post at the Bioscience Resource Project, a website devoted to food and agriculture. The post, written by two plant geneticists, plays a tune that will be familiar to anyone who has encountered the rhetoric of GeneWatch UK: basically, modern genomics is pure hype perpetuated by scientists seeking grant money and corporations seeking to absolve themselves of responsibility for environmental disasters.
The…
sb admin | December 3, 2010A reminder to anyone who reads my other blog Genomes Unzipped that we have a reader survey underway there now, which includes some questions about genetic testing experiences and attitudes towards genetics. We're closing the survey to responses this weekend, so if you're an Unzipped reader but haven't had a chance to fill in the survey, please do so now.
sb admin | November 24, 2010Update 30/11/10: 23andMe has extended their 80% discount until Christmas, without a need for a discount code.
Personal genomics company 23andMe has made some fairly major announcements this week: a brand new chip, a new product strategy (including a monthly subscription fee), and yet another discount push. What do these changes mean for existing and new customers?
The new chip
23andMe's new v3 chip is a substantial improvement over the v2 chip that most current customers were run on (the v2 was introduced back in September 2008). Firstly, the v3 chip includes nearly double the number of…
sb admin | October 12, 2010
Back in June I launched a new blog, Genomes Unzipped, together with a group of colleagues and friends with expertise in various areas of genetics. At the time I made a rather cryptic comment about "planning much bigger things for the site over the next few months".
Today I announced what I meant by that: from today, all of the 12 members of Genomes Unzipped - including my wife and I - will be releasing their own results from a variety of genetic tests, online, for anyone to access. Initially those results consist of data from one company (23andMe) for all 12 members; deCODEme for one…
dgmacarthur | October 12, 2010
Back in June I launched a new blog, Genomes Unzipped, together with a group of colleagues and friends with expertise in various areas of genetics. At the time I made a rather cryptic comment about "planning much bigger things for the site over the next few months".
Today I announced what I meant by that: from today, all of the 12 members of Genomes Unzipped - including my wife and I - will be releasing their own results from a variety of genetic tests, online, for anyone to access. Initially those results consist of data from one company (23andMe) for all 12 members; deCODEme for one…
dgmacarthur | June 25, 2010An excerpt from an article I co-wrote for Xconomy with Genomics Law Report's Dan Vorhaus - link to the full article below.
Are you ready for consumer genetics? Is your government?
Recent announcements of federal investigations into the budding direct-to-consumer (DTC) genetic testing industry suggest that authorities are preparing to increase regulation of companies offering consumers access to their own genetic data. However, rather than rushing in to clamp down on the industry, regulators should slow down and focus, first, on understanding this complex field.
An increasing number of…
bioephemera | March 9, 2009The President just released a new memorandum on scientific integrity:
Science and the scientific process must inform and guide decisions of my Administration on a wide range of issues, including improvement of public health, protection of the environment, increased efficiency in the use of energy and other resources, mitigation of the threat of climate change, and protection of national security. The public must be able to trust the science and scientific process informing public policy decisions. Political officials should not suppress or alter scientific or technological findings and…