This past Wednesday (04/03/2019), a group of graduate students and postdoctoral researchers from Case Western Reserve University visited legislators at the Ohio State Capitol to discuss how a paid family medical leave program can improve STEM career retention in Ohio and the need for a science policy fellowship program to improve Ohio’s capacity for evidence-based policy.
We started out with ambitious plans to put together a newsletter to disseminate to the community but we quickly realized the logistical and operational challenge of such an undertaking. Starting today, we will ask students from around the country to write about science issues they care about in a way that builds our understanding of the right to science.
Access to information is a broad concept, but it is a universal human right that is instrumental in empowering people to make informed decisions and direct their own lives. As September 28th was the International Day for the Universal Access to Information, this issue of the newsletter will focus on this universal human right. UNESCO’s focus on access to information lies heavily in promoting information technology, internet access, multilingual information delivery, and availability to those with disabilities, as well an emphasizing government transparency. Other critical facets of access to information include corporate transparency and accountability, accurate and unbiased dissemination of scientific findings, and freedom of the press.
Sat. October 27th, 11 am - 2:30 pm
TVUC 134B - Senior Classroom B
Mon. October 29th, 5:15 - 6:15 pm
KH Smith Bldg 146
Thursday, November 1st, 5:30 - 7:30 pm
Speaker: Arelis Palacios
Friday, November 2nd, 10 am - 12 pm
TVUC 134B - Senior Classroom B
Speaker: Arelis Palacios
Monday, November. 26th, 5:15 - 6:15 pm
TVUC 134B - Senior Classroom B
Speaker: Evan Meszaros
Monday, December 10th
Science Policy Opportunities
AAAS Science and Technology Policy Fellow
Access to Information
Freedom of information through UNESCO: September 28th has been established as the International Day for the Universal Access to Information. Article 19 of the Universal Declaration of Human Rights covers the right to universal access to information, which is a key facet of the right to seek and receive information, and the right to freedom of expression. This year, UNESCO’s International Programme for the Development of Communication (IPDC) hosted a series of talks titled Good Laws and Practices for Open Societies on September 27th, to coincide with the International Day for the Universal Access to Information.
The disappearance of Jamal Khashoggi: Saudi Arabian journalist Jamal Khashoggi disappeared after entering the Saudi Arabian consulate in Turkey on October 2nd, and is thought to be dead. The fallout from this event has already placed a great deal of strain on Saudi Arabia’s ties with its allies and foes alike, and has sent shockwaves through the global community of journalists.
Freedom of information in Nigeria: A two-year push by the Bureau of Public Service Reforms (BPSR) in Nigeria toward open, transparent government agencies has been met with low compliance. As such, Nigeria’s Bureau of Public Service Reforms has established seminars and training sessions on how to improve information access and speed compliance.
Freedom of information in Venezuela: Information requests to the government have gone unanswered, and dissenting media outlets have been silenced. Citizens turning to the internet for news have found that the main internet provider, state-owned CANTV, actively blocks access to major news outlets such as La Patilla, El Nacional, and El Pitazo.
Global freedom of the press: The Newseum in Washington DC, which maintains a permanent exhibit showing the status of free press worldwide. This map is based on analysis done by the Freedom House, a summary of which can be found here.
Medical Records in the United States: A study published in the Journal of the American Medical Association found that medical records in many American hospitals are unduly difficult or expensive to obtain. From the article: “There were overwhelming inconsistencies in information related to patients regarding the personal health information they are allowed to request, as well as the formats and costs of release, both within institutions and across institutions,” said Carolyn Lye, first author on the study and a student at the Yale School of Medicine. “We also found considerable noncompliance with state and federal regulations and recommendations with respect to the costs and processing times associated with providing access to medical records.”
Website Access for the Disabled: The Americans with Disabilities Act requires public accommodations to be accessible to disabled people, but was written in a time before the widespread of the internet. The Department of Justice began drafting guidelines for website accessibility in 2010, but this has since been on hold indefinitely. As such, companies are now beginning to face lawsuits regarding the accessibility of their websites, with no clear guidelines from the DOJ on how handle these cases.
Water as a basic right: Arbitrary water disconnections in Zimbabwe spurred a Supreme Court ruling that judges the disconnections to be reasonable and legally allowable, leading to fear and speculation about section 77c of Zimbabwe’s constitution, which enshrines the human right to water.
They Are Invisible: 2.6 million people die each year as a result of unsanitary environments and lack of access to clean, safe water. One-third of the world’s population continues to drink water that is dangerous to their health. 2.6 billion still lack adequate sanitation facilities. These figures come from Solidarites International’s 2018 Water, Hygiene and Sanitation Barometer, which outlines the global state of water and sanitation access.
Nestle continues extraction of water from Six Nations land: Residents of Ontario’s Six Nations Land of the Grand River reserve live without running water and must truck in undrinkable water collected from a public tap and purchase potable water from towns over 10 km away. Some residents also supplement water supplied from collected rainwater. Meanwhile, Nestle continues to pump up to 3.6 million liters of water daily from Six Nations land.
EPA dissolves Office of the Science Advisor: The Office of the Science Advisor is tasked with ensuring decisions are based on quality science. This office will be merged with the Office of Research and Development. Michael Halpern, deputy director of the Center for Science and Democracy with the Union of Concerned Scientists, calls this move “a pretty big burying of this office.” The EPA argues that the move is to “eliminate redundancies”
Sound and Transparent Science in Regulation: On October 3rd, the Senate Committee on Environment and Public Works Subcommittee on Superfund, Waste Management, and Regulatory Oversight will held a subcommittee meeting titled “Oversight of the Environmental Protection Agency’s Implementation of Sound and Transparent Science in Regulation.”
Access to Medicine
Sandoz Healthcare Access Challenge: Novartis’ generics and biosimilars division, Sandoz, has announced the establishment a competition that challenges entrepreneurs to compliment and disrupt existing approaches to driving access to healthcare. Three selected entrants will be given support to develop their ideas, and will be able to present their ideas at South By Southwest in Austin, TX. Applications close November 30th.
‘Gaming’ the generic drug approval process: A statement from FDA commissioner Scott Gottlieb gives an overview of current strategies drug manufacturers use to prevent generics from reaching market, and what steps the FDA is taking to deter this, including more a more efficient approach to 505(q) petitions.
Ms.Medicine going public: Lisa Larkin, a Cincinnati physician who operates a practice that provides concierge care for women, plans on franchising the concept. According to Larkin, “Women are not getting the care they need or deserve in today’s primary care setting, and women’s health-specific issues are often neglected and ignored...Physicians practicing in the traditional health care model are restricted by health insurance or Medicare, which means they are forced to see more and more patients in a day and spend less time with each patient, so only urgent needs can be addressed.”
Re-scheduling cannabis products: The DEA has moved some cannabidol (CBD) products off the list of schedule 1 substances, reclassifying those that contain less than 0.1% THC as schedule 5 drugs. This move appears to indicate a shift toward the recognition of certain medically valuable aspects of cannabis-derived products.