Tag: state government

Bioethics Blogs

The Americans with Disabilities Act: Before and After the Fall

For the past many years, I have publicly and privately acknowledged the July 26th anniversary of the Americans with Disabilities Act. Public recognition of the anniversary was an important part of my role as the Administrator of the Administration for Community Living (ACL), the federal agency that funds a variety of important programs that support people with disabilities and their families. Two years ago, at the 25th anniversary, I attended community and campus events in Lawrence and highlighted the anniversary in Washington, D.C. 
One of my favorite aspects of this annual recognition is the company I keep. Many of the individuals who fought at the local, state and federal level for the civil rights of people with disabilities still walk and roll among us. Over the course of my seven years in Washington and during my time in Kansas state government, I have had the pleasure of meeting and collaborating with some of the strongest advocates for people with disabilities in this country. To know the people who created and fought for the ADA is nothing less than an honor. Many of the leaders in this movement are now my friends.

Blame the Mouse

Beginning in August 2016, the benefits of the Americans with Disabilities Act were made real for me. On August 2nd of last year, I fell from a ladder (blame the dead mouse in my attic) and sustained a serious injury to my right leg. I shattered the top of my tibia and fractured my ankle. I was in the acute care hospital for six days and inpatient rehab for 12.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Web Roundup: Water by Lily Shapiro

Before I began graduate school, I worked in water-related public health, and have continued to follow the news around water. This month, some stories (mostly) about water.

Trump signed an order last week to “expedite” the construction of the Dakota Access Pipeline, which jeopardizes the water source for the Standing Rock Sioux Reservation, and for many others who drink water from the Missouri River. Opponents of the pipeline are not surprised, and are gearing up for a fight. Although most of Silicon Valley has come out against Trump (though perhaps in somewhat tepid terms), particularly in light of his recent executive order on immigration, Peter Thiel has been tapped to help Trump pick someone to lead the FDA, with the goal of decreasing its regulations around drug approval process. Vox goes into detail about why that’s a bad idea. (And, before we move away from the topic of Trump’s horrifying first week in office, if you haven’t read CultAnth’s interview with prof of anthropology and lawyer Darryl Li on the travel ban, I recommend it).

California has recently gotten some much-needed rain (and snow) this month. Researchers and farmers there are experimenting with methods, which include flooding fields during the winter, to use this rain to recharge the depleted groundwater aquifers. Also, check out this time lapse of the California drought from 2011-present. The storms also toppled an iconic, if controversial, “drive-through” Sequoia tree, one of the last still standing in a public park.

Meanwhile, the state of Tamil Nadu, in South India, is experiencing its worst monsoon in nearly 150 years, a crisis worsened by the demonetization on November 9 (in which the Rupees 500 and 1000 notes were declared invalid), resulting in the deaths of numerous farmers and recent agitations by farmer’s groups.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In The Journals – November by Christine Sargent

Hello trusty readers. Check out November’s haul for “In The Journals,” and be sure to check out the special issue of Science, Technology, and Human Values: Feminist Postcolonial Technosciences.

 

American Ethnologist:

Memory, body, and the online researcher: Following Russian street demonstrations via social media (open access)

Patty A. Gray

The Moscow street demonstrations of 2011–12 were the largest public gatherings in Russia since the collapse of the Soviet Union. They were also the largest-ever gathering of Russians on social media. While using the Internet to follow such large-scale social movements remotely, researchers experience social media as a context in which anthropology happens. They may think about “being there” in new ways that shift their focus to their own processes of memory making and sense of bodily presence. Experiencing and remembering social media in the body challenges the distinctions we might otherwise make between virtual and physical encounters.

Royal pharmaceuticals: Bioprospecting, rights, and traditional authority in South Africa

Christopher Morris

The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning. Rather than exclusion and the closure of ethnic boundaries, resource rights in this context foreground forced enrollment and the expansion of indigenous group-membership as modes of capitalist accumulation in an extractive economy.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Euthanasia: Victorian Parliamentary Report Recommends Legalisation of Assisted Dying

June 10, 2016

(Australian Broadcasting Co) – A Victorian cross-party state committee has delivered a groundbreaking report recommending the State Government legalise assisted dying for people suffering from serious and incurable conditions. The controversial recommendations were handed down by Parliament’s Legal and Social Issues Committee, which has been investigating options for the terminally ill over the past 10 months. The report makes 49 recommendations covering assisted suicide and amending the Crime Act, to protect doctors who act within the assisted dying legislation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Pharmaceutical Transparency Bills: Targeting Disclosures Purposefully

On Monday, the Massachusetts Joint Committee on Health Care Financing held a hearing on Senate bill 1048, which would require pharmaceutical companies to report to the state a range of information on their research & development costs, marketing and advertising costs, and prices charged to a number of different purchasers.  The hearing, recapped by the Boston Globe and Gloucester Times (among others), went as expected, with industry executives opposing the bill and health insurers, consumer advocates, and others testifying in support.

Massachusetts is not the only state considering a transparency bill.  At least ten other states, including California, North Carolina, Oregon, and Virginia have all drafted bills that would advance similar goals.  These bills do differ in their details.  As just one example, each state would require disclosure from a different set of drugs and companies.  Massachusetts would only require disclosure of costs and pricing for the top twenty selling drugs in the state (where the list is based around a set of criteria including but not limited to cost), California, Oregon, and Virginia would require disclosure for any drug whose wholesale cost is $10,000 or more per year (in California, this includes over 900 drugs), and North Carolina’s bill is framed around classes of drugs, rather than prices.

It is no accident that these bills have been developed in the wake of Martin Shkreli, Valeant Pharmaceuticals, and other drug pricing scandals.  Patients and policymakers are seizing this moment to take action against the drug industry. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

More changes to donor law considered in NSW

The State government New South Wales is considering tightening rules regulating embryo donation after a woman who received donor eggs allegedly lied to doctors and the embryo donor about the fate of her pregnancy.  

The donor recipient, who has remained unidentified by the media, received embryos from Mrs. Natalie Parker in late 2014. The woman and her partner agreed to stay in contact with Parker once the baby was born. Yet late last year the donor recepient contacted Parker over the phone saying that implantation had failed.

Parker was suspicious of the woman, and tracked her down via Facebook. She discovered that the woman had indeed given birth to a child, and the child looked strikingly like Parker’s own children. Parker feels certain that that the child is hers, though IVF Australia are still investigating the matter. “I feel taken advantage of, and incredibly sad”, Parker said.

NSW health minister Jillian Skinner said that authorities are considering whether they should further strengthen donor law in the state. “A case made public [on Sunday] raises issues which the NSW Ministry of Health will look into to determine if any further strengthening is required,” Ms Skinner said. Late last month the State Government passed new legislation that will give all donor conceived children the opportunity to access limited identifying information about their fathers.

This article is published by Xavier Symons and BioEdge under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Capital punishment. Many sentenced but few executions in the United States

Pending further decisions by the Supreme Court of the United States on the death penalty, a growing trend has been observed in favour of abolitionism. This is illustrated in the bill against the death penalty approved by the Nebraska State Government, which was subsequently vetoed by the State governor, Republican Pete Ricketts.In the end however, on Wednesday 27th May, this veto was lifted with a 30 to 19 vote, despite the Republican majority (traditionally in favour of maintaining the maximum sanction).

Capital punishment: latest datacapital

In that context, a news article by the BBC on the non-execution of prisoners is interesting. It was broadcast in the wake of the death sentence handed down to DzhokharTsarnaev, one of the authors in the attack on the 2013 Boston marathon, which resulted in three deaths and 264 people injured. The decision of the judges does not necessarily imply that he will be executed, because fewer than 20% of those sentenced eventually have the penalty applied.

Between 1973 and 2013, 8,466 people were sentenced to death, but only 1,359 were executed. The BBC cited a study by Frank R. Baumgartner, a professor of Political Sciences at the University of North Carolina at Chapel Hill, who analysed the situation of inmates on death row: on December 2013, 2,979 wereawaiting execution; 392 had theirsentence commuted; and 3,194 had their sentence overturned. Others have died waiting, either of natural causes or suicide.

Campaigns in favour of abolitionism also use data (although unconfirmed) from the NGO EqualJusticeInitiative:”For every nine people that we have executed in America, we have identified one innocent person on death row”.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Guest Post: JABBING, PLAYING, AND PAYING – HIGH SEASON ON ANTI-VAXXERS

Christopher Chew
Monash University

In the strange, upside-down world of the Southern Hemisphere, cold and gloomy Winter is quietly slinking away, and raucous Spring in all his glory begins to stir. Ah, Spring! The season of buds and blooms and frolicking wildlife. One rare species of wildlife, however, finds itself subject to an open hunting season this Spring – the anti-vaxxer.

In April this year, the Australian Federal Government announced a so-called “no jab, no pay” policy. Families whose children are not fully vaccinated will now lose subsidies and rebates for childcare worth up to almost AUD$20,000 per child, except if there are valid medical reasons (e.g. allergies). Previously, exemptions had been made for conscientious and religious objectors, but these no longer apply forthwith.

Taking things a step further, the Victorian State Government earlier this week announced an additional “no jab, no play” policy. Children who are not fully vaccinated, except once again for valid medical reasons, will additionally now be barred from preschool facilities such as childcare and kindergartens.

I should, at this point, declare my allegiances – as a finishing medical student, I am utterly convinced by the body of scientific evidence supporting the benefits of childhood vaccination. I am confident that these vaccines, while posing a very, very small risk of severe side-effects like any other medicine, reliably prevent or markedly reduce the risk of contracting equally severe diseases. And finally, I believe that the goal of universal childhood vaccination is one worth pursuing, and is immensely beneficial to public health.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Quarantine: The politics are as real as the science

Implementation
of medical quarantines in America brings into conflict various legitimate arguments
regarding who, if anyone, should have the authority to restrict movements of
citizens.
  Quarantines are not new, but they
exist now in a world with new dangers and new opportunities for abuse.

In teaching
medical students in recent years, it became apparent that many students found
the concept of a home quarantine to be abhorrent.
  Many were aghast at the concept that a
patient could be restricted from daily activities, and found it an egregious
violation of civil liberties and ethical conduct.
  Interestingly, these views were often not
mitigated substantially when students were informed that, in former days,
quarantines were fairly common in this country and elsewhere.
  In a world before the Internet in which home
confinement was really quite restrictive, medical quarantines for diseases such
as small pox, tuberculosis, or even measles were not uncommon.
  Such quarantines were usually imposed by a
local health official.
  In addition, many
families self-quarantined, or at least avoided exposure to potential sources of
disease.
 For example, some people used
to avoid many summer activities for fear of contracting polio.
  Due largely to the development of
vaccination, many of the diseases that would have invoked a quarantine in
earlier years are no longer of concern, and the concept of quarantine has
become a bit anachronistic, even in a world that offers many portals that would
seemingly make confinement less onerous.
 
But the topic of quarantine requires renewed consideration in the world
of today.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Western Australia abandons shark cull

Western Australia Premier Colin Barnett

Government of Western Australia

The state of Western Australia is abandoning a controversial shark-culling programme, but has also gained the right to deploy deadly baited lines for animals that pose an “imminent threat”.

The programme, run by the state government off several Western Australian beaches, had been heavily criticized by scientists when it was announced in 2013. It was due to run until 2017, and had caught at least 170 sharks using hooks suspended from drums moored to the sea floor.

In September the state’s own Environmental Protection Agency halted it. State Premier Colin Barnett then applied to the national government for permission to resume it, but today he announced that his government had ended that effort. “We have withdrawn the application after reaching agreement with the Commonwealth which enables us to take immediate action when there is an imminent threat,” said Barnett.

Under an agreement with the national government, Western Australia will be able to kill sharks in future to deal with a shark that has attacked or with one that it thinks poses a threat. Protocols for how this would happen are now in development.

This apparent concession from the national government has drawn some concern from those celebrating the end of the cull.

“I remain concerned that drum lines could be used in some instances as part of emergency measures and particularly that this could occur without Federal approval,” said Rachel Siewert, the marine spokeswoman for the Australian Greens, in a statement.

The Western Australia cull is also drawing renewed attention to the longstanding cull in Queensland, which continues unabated.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.