Tag: legislation

Bioethics Blogs

Federal “Right to Try” Legislation – perpetuating a misguided skepticism towards the FDA

Cross-posted from the CRITical Thinking blog. By Jeanie Kim The “right to try” (RTT) movement presents a narrative that pits patients against the FDA. Supporters of RTT, powered by the libertarian Goldwater Institute, have pushed for laws that let terminally ill patients bypass … Continue reading

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

Moral panic in the intellect

Moral panic develops intellectually. It is our thoughts that are racing. Certain mental images make such a deep impression on us that we take them for Reality, for Truth, for Facts. Do not believe that the intellect is cold and objective. It can boil over with agitated thoughts.

This is evident in bioethics, where many issues are filled with anguish. Research information about cloned animals, about new techniques for editing in the genome, or about embryonic stem cell research, evoke scary images of subversive forms of research, threatening human morality. The panic requires a sensitive intellect. There, the images of the research acquire such dimensions that they no longer fit into ordinary life. The images take over the intellect as the metaphysical horizon of Truth. Commonplace remarks that could calm down the agitated intellect appear to the intellect as naive.

A science news in National Geographic occasions these musings. It is about the first attempt in the United States to edit human embryos genetically. Using so-called CRISPR-Cas9 technique, the researchers removed a mutation associated with a common inherited heart disease. After the successful editing, the embryos were destroyed. (You find the scientific article reporting the research in Nature.)

Reading such research information, you might feel anxiety; anxiety that soon takes possession of your intellect: What will they do next? Develop “better” humans who look down on us as a lower species? Can we permit science to change human nature? NO, we must immediately introduce new legislation that bans all genetic editing of human embryos!

If the intellect can boil over with such agitated thoughts, and if moral panic legislation is imprudent, then I believe that bioethics needs to develop its therapeutic skills.

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

Teaching Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

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

Canadian Law that Excepts Religious Hospitals from Offering Assisted Deaths Disputed by Dying with Dignity

The Canadian not-for-profit Dying with Dignity is considering challenging provincial Ontario legislation that permits religiously affiliated hospitals to refrain from offering medically assisted death. Under current Ontario law, hospitals, hospices and long-term care centers that wish not to facilitate assisted death may refrain from doing so, and are instead obligated to transfer the patient to an alternative willing healthcare facility. In this respect, the legislation parallels hospitals’ option to electively refrain from performing abortions on ethical grounds outlined by the Catholic Health Alliance of Canada. Under a potentially emergent legal challenge, however, these publicly funded healthcare facilities could lose their permission to deny direct facilitation of a patient’s death.

As part of its rationale for challenging the law, Dying with Dignity cites the prospective trauma that a patient can further undergo if a transfer is necessary. The not-for-profit’s chief executive Shanaaz Gokool also stated that “what Ontario did is they gave an opt-out to basic and essential health care to hospitals that don’t want to provide for the dying.” Though it is challenging a healthcare facility’s legal right to refrain from assisting death, it maintains that individual healthcare providers ought to maintain that individual right.

To date, over 630 Ontarians have legally ended their lives with medical assistance. Time will tell whether in this potential legal conflict between religious and medical institutions, the law may yet facilitate higher numbers.

The post Canadian Law that Excepts Religious Hospitals from Offering Assisted Deaths Disputed by Dying with Dignity appeared first on Global Bioethics Initiative (GBI).

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

Texas Outlaws DNR Orders Written without Consent

The Texas Legislature has passed and the Governor has signed S.B.11.  This effectively bans non-consensual DNR orders. 

Look for my analysis of this legislation and its relationship to TADA at ICEL2, next month in Halifax.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media.

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

Americans Eager For Leaders To Cooperate To Make Health Law Work

August 11, 2017

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Move on.

That’s what most people say Congress and the Trump administration should do after the Senate failed to approve legislation in July to  revamp the Affordable Care Act, according to a survey this month.

Nearly 8 in 10 Americans say President Donald Trump should be trying to make the health law work, according to poll conducted by the Kaiser Family Foundation. This includes large majorities of Democrats (95 percent) as well as half of Republicans (52 percent) and President Trump’s supporters (51 percent). (Kaiser Health News is an editorially independent program of the foundation.)

Almost 6 in 10 people think the Republicans should work with Democrats to improve the health law.

Only 17 percent of the public — and 40 percent of Republicans — think the Trump administration should take steps to make the health law fail, the survey said.

… Read More

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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

The Opioid Epidemic is an Epidemic of Stigma

Kristie Serota and Daniel Z. Buchman argue that eradicating the stigma associated with opioid use is an ethical necessity and is critical for population health.

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The Government of Canada reports that over 2458 Canadians died of apparent opioid-related deaths in 2016 (excluding Quebec). Last November, an average of 4 people died from overdoses every day in British Columbia. Recent U.S. estimates project opioid-related deaths at over half-a-million people over the next decade. Interventions have been implemented in many jurisdictions to minimize opioid-related mortality, but each year the death toll continues to rise and shows no signs of relenting.

While people dying from opioids in large numbers is not new, the present epidemic arose due to several complex factors. For example, OxyContin was aggressively marketed and prescribed for chronic non-cancer pain. Doctors and the public were misled about OxyContin’s addiction risks. In addition, health professionals receive limited training on pain and addiction. There are also inequities due to the social determinants of health and the harmful effects of substance use-related stigmas.

Stigma, operating at individual, institutional, and social levels, has led to punitive legal, policy, and clinical responses toward people who use drugs. Stigma has also led to chronic underfunding of addiction research and treatment services relative to the burden of disease. Although the current epidemic does not discriminate across the social gradient, stigma disproportionately burdens people from less privileged social groups more frequently and harmfully than others. People with no history of a substance use disorder risk the pejorative label of ‘addicts’ when they are prescribed opioids for pain management.

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

Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.

The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:

1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.

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.