HR 3699, the Research Works Act, has been introduced in the U.S. House of Representatives to undo progress made in increasing taxpayer access to research funded by our tax dollars.

Introduced by California’s Darrell Issa and New York’s Carolyn Maloney, the bill would prevent the government from requiring that papers resulting from taxpayer-funded research be deposited online for free access to those taxpayers. In other words, it’s meant to protect the income streams of publishers, even when that income is derived from publishing the results of research studies funded by the government, works that should logically belong in part to the U.S. people who paid for them.

Practically, if passed, this bill would reverse the huge strides made in recent years for taxpayer access to federally funded medical research. A few years ago, it became a requirement that papers reporting results from research funded by the federal National Institutes of Health be deposited online in PubMed Central for free access. Because a huge amount of U.S. medical research is NIH-funded, this has meant that many articles about research affecting the public’s healthcare have become freely available online to that public that paid for it.

This NIH Public Access Policy generously gave publishers a one-year grace period for each article, meaning that any person, library, researcher, or even state and federally-funded institutions needing access to the most current research findings would still have to pay the publisher for access to those articles.

This is apparently not enough of the pie for publishers, who have fought for years against such taxpayer access. The Association of American Publishers is lobbying hard for this restrictive new bill, claiming public access policies are unwarranted interference with the private sector. Not surprisingly, one of Rep. Maloney’s top donors is Reed Elsevier, an AAP member and perhaps the biggest publisher of medical research (with $1.6 billion in profit in 2010) through its Elsevier division.

Find your Representative and her/his contact information and send a message at https://writerep.house.gov/writerep/welcome.shtml. Several societies (such as the American Medical Association and American Nurses Association) and university presses are also members of the AAP – if you’re a member of these organizations or affiliated with a university whose press belongs to the AAP, you might also contact them to express your opposition.

It’s not just scientists who should oppose this legislation – it’s patients, educators, librarians, providers, and caregivers – anyone who believes that when the government funds medical research ultimately for better knowledge about people’s bodies and how to treat them, those people should be able to access that information. Write your Rep today.

Some other useful posts I liked on this topic:

• Elsevier-funded NY Congresswoman Carolyn Maloney Wants to Deny Americans Access to Taxpayer Funded Research – Michael Eisen at It Is Not Junk
• Why Is Open-Internet Champion Darrell Issa Supporting an Attack on Open Science? – Rebecca Rosen at The Atlantic
• Raising the barriers: restricting access to scientific literature will hurt STEM education – Sandra Porter at Discovering Biology in a Digital World at ScienceBlogs
• The Research Works Act: asking the public to pay twice for scientific knowledge – Janet Stemwedel at Scientific American’s Doing Good Science
• Scientists, Fight For Access! – Kevin Zelnio at Scientific American’s EvoEcoLab
• Why does the University of California Press support reactionary legislation opposing public access to scientific research? – Michael Eisen at The Berkeley Blog
• Calling on Publishers to Resign from The Association of American Publishers Re Anti-Open Access Stance, and YHGTBFKM: Ecological Society of America letter regarding #OpenAccess is disturbing – Jonathan Eisen at The Tree of Life
• And for even more, check this roundup from John Dupuis of ScienceBlogs, Around the Web: Some posts on The Research Works Act (Updated!), at Confessions of a Science Librarian

Filed under: Access, Rights, & Choice, Government, Libraryland

The local newspaper is covering genetic tests for breast cancer, privacy, gene tests patents, cost, and the fears some people have about getting tested.

Iris Carmen at Jezebel has a piece, “The Fight For Abortion Access For Military Women,” that is really about barriers in the military that prevent women from reporting sexual assault, the institutional difficulties faced by women servicemembers who become pregnant, and their lack of access to abortion coverage and providers.

Via the CDC’s National Prevention Intervention Network (@cdcnpin)

Follow @CDCNPIN@CDCNPIN
CDC NPIN

#30years ago today, @CDCMMWR reported on 1st cases of what became known as #AIDS. http://ow.ly/59vq3

June 5, 2011 8:31 am via webReplyRetweetFavorite

The link in the tweet goes to the actual June 5, 1981 MMWR reporting 5 cases of Pneumocystis Pneumonia in Los Angeles. It’s sort of a punch in the gut to read the opening passage of the editorial note – where the MMWR tries to explain what might be going on – knowing what was coming, what these 5 cases were the canary for. Warning for reference to a “homosexual lifestyle.”

Editorial Note: Pneumocystis pneumonia in the United States is almost exclusively limited to severely immunosuppressed patients. The occurrence of pneumocystosis in these 5 previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual. The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.

Via a librarian attending the Biomedical Informatics course at Woods Hole (#bmispring2011), I learned about the Office of Research Integrity’s page of summaries of closed research misconduct investigations. The cases seem to consist primarily of researchers making up or faking data or figures.

Thought Catalog (with which I’m unfamiliar) has “Tale of an Abortion,” one woman’s story of her choice to have an abortion.

Some Indiana politicians voted to defund Planned Parenthood, which received federal Medicaid/Title X funding for non-abortion health care, like cancer screenings and contraception. In response, HHS sent the state a letter explaining that they could not “exclude qualified health care providers from providing services that are funded under the program because of a provider’s scope of practice.” In other words, you can’t keep somebody from providing Medicaid-funded care just because they also provide non-Medicaid-funded abortions. Apparently it’s going to court.

The Feminist Majority Foundation reports in their feminist daily news that Yale Faces Possible Fines for Failure to Report Sex Crimes.

People.com associate editor Janet Mock writes for Marie Claire about her life as a transgender woman. She also was interviewed for NPR’s Tell Me More; a couple of the commenters note the inappropriate headline given the piece, which used “transgender” as a noun.

Notes from Libraryland:
The Wall Street Journal has a commentary that shouts “you kids get offa my lawn” at current YA fiction, which is apparently too dystopian, depressing, dark, and dangerous for young folks. There’s been a pretty awesome outpouring in defense of (YA) books on Twitter, using the #yasaves hashtag, with many reporting how alone, uninformed, afraid, sheltered, isolated, etc. they would have been if not for YA fiction, which can particularly be a lifeline for people who find that they are different in some way.

Also? It’s pretty hilarious that alongside an article decrying dystopia, darkness, and destruction in current YA fiction, and looks approvingly at efforts to keep those bad, bad YA books out of the hands of kids, a recommended, apparently-officially-okay title is Fahrenheit 451. Excuse me while I step away for a giggle break.

Here’s a 1971 letter from Isaac Asimov to future patrons of a new library. The Troy, MI library in question is in danger of closing if local folks don’t vote this August to fund it.

Apparently there will soon be swag for the National Library of Medicine’s 175th anniversary. This appeals to a special type of library geek.

Via searching on the #yasaves topic, I found this list of YA book recommendations, and have added several of these to my to-read list. Worth checking out.

The title: It has been 95 degrees here for the last week. I’m still walking 2.5 miles outside every day and have a broken a/c at home. If this is May, I might have to move to Antarctica in August.

Filed under: Abortion, Abuse, Rape, & Safety, Access, Rights, & Choice, Adolescent Health, Cancer, Funny, Government, HIV/AIDS, Libraryland, Miscellaneous, News Round-Ups, Pregnancy