Tag: disabled persons

Bioethics Blogs

How to make Nazi doctors

Most people who go into medicine have as at least part of their motivation the desire to help other people. I’m sure this was as true in 1930’s Germany as anywhere else. So how did a cadre of Nazi doctors come not only to commit crimes against humanity, but also to defend the moral correctness of their conduct when placed on trial for those crimes? The answer is complex, but one way was through the teaching of medical ethics.

An article in the April 18th Annals of Internal Medicine tells a cautionary tale for teachers and learners of bioethics. Entitled “Lectures on Inhumanity: Teaching Medical Ethics in German Medical Schools Under Nazism,” the article details how the Nazi party developed a curriculum for teaching ethics in medical schools that “was intended to explicitly create a ‘new type of physician’ . . . trained to internalize and then implement the Nazi biomedical vision . . . shifting the focus of ethical concern and medical care away from the individual patient and toward the general welfare of society or the people.” The curriculum included lectures in racial hygiene, the science of heredity, population policy, military medicine, and the history of medicine. Only long-standing members of the Nazi party were appointed lecturers. The lecturer at Berlin University, Rudolf Ramm, wrote the ethics textbook used in the curriculum, which emphasized physician paternalism in practicing their moral obligation to rid society of certain groups, and asserted that every (Aryan) person in Germany had a moral duty to stay healthy.

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

“Assisted Suicide: The Musical”

The Wall Street Journal’s weekend edition for March 4-5, 2017 carried a “Saturday interview” (subscription required) with one Liz Carr, the creator and, I gather, star of a stage production in London called “Assisted Suicide: The Musical.”  In the article, we read that it received a standing ovation from a full house, but the show’s website shows a one-night-only run.

The 46 year-old Ms. Carr is described as suffering from “a genetic disorder that prevents her from extending her muscles, among other impairments.”  She worries that the assisted suicide movement is benefiting from repeating “the right to die” like a “mantra.”  In the play, she plays a character called “Documentary Liz,” who, accompanied by “manipulative” music, is presented to the public as a pitiful character who really is trapped by life and would be better off dead.

Ms. Carr further comments that assisted suicide advocates hide behind two ideas: dignity—which is understood to depend on health, so that ill or disabled persons somehow lack it unless they end their lives—and self-determination, a term cruelly misused.  “Legalizing euthanasia doesn’t empower you,” she says.  “It empowers doctors.”  Her WSJ interviewer adds: “In the context of the modern welfare state, that means empowering agents of the government.”

She mocks the term used by assisted suicide proponents—“dignicide,” intended to denote death with dignity—as the denial of human dignity.

She argues that assisted suicide is not about autonomy, but about fear of death, something we don’t talk about any more in an irreligious society.  “I say this as an atheist,” she adds.

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

10th Anniversary Baby Markets Congress

Baby Markets: Money and the New Politics of Creating Families (Cambridge University Press 2010, 1st ed., ed. Michele Goodwin)

“We can only assess the justice of baby markets by stripping away the veneer of ‘freedom,’” said Dorothy Roberts at the Baby Markets International Congress, which met April 1-3 in Southern California. The meeting celebrated the 10th anniversary of the Baby Markets Roundtables series founded by Michele Goodwin, Chancellor’s Professor at UC Irvine Law School, author of Baby Markets (2010), and founder of the Center for Biotechnology and Global Health Policy.

For three days, panelists and participants engaged with assisted reproductive technologies (ARTs), reproductive justice, contractual parentage and procreation relationships, genetic testing and selection of embryos, gestational and transnational surrogacy, in vitro fertilization, abortion laws, constitutional rights to procreation and assisted reproduction, LGBT access to adoption and ARTs, selective reduction, and fertility professional negligence.

@DorothyERoberts “baby markets aren’t free” keynote address at #BabyMarkets2016 @UCILaw @UCIrvine @Penn pic.twitter.com/7K9AC45Joo

The keynote address by Dorothy Roberts, professor of law and sociology at the University of Pennsylvania and CGS advisory board member, painted a rich picture of the complex systems of oppression that backdrop free trade reproduction. Roberts highlighted the wide-ranging reproductive injustices of abortion bans, neoliberal public healthcare disinvestment in the United States, dependency courts and disruptions of families of color, and centuries of ongoing racism that make it impossible for baby markets to be “liberating” for women of color.

Roberts also reflected on the “new eugenics” that pressures parents to make “the right genetic decisions,” leading to the widespread use of pre-implantation genetic diagnosis to select against disability, and the support of a few enthusiasts to attempt next-generation genetic engineering with CRISPR-Cas9 to “edit” the traits of future children.

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

Not Dead Yet: An Unprincipled Position against Assisted Death

Stuart Chambers calls on Not Dead Yet to re-evaluate the beliefs that have shaped their anti-euthanasia and anti-assisted suicide mindset.

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Despite greater social acceptance of euthanasia and assisted suicide (acts of commission), the disability rights activist group Not Dead Yet continues to lobby against these end-of-life alternatives for seriously ill and disabled persons.

For Not Dead Yet, only withholding or withdrawing life-sustaining treatment (acts of omission) are ethically and medically appropriate, and only when patient choice is based on “informed consent” and “true availability of other desired options.” By embracing this moral distinction between acts of commission and acts of omission, Not Dead Yet adopts a position that is clearly unprincipled. 

Edvard Munch – Death in the Sickroom

On its Colorado website, Not Dead Yet states that it opposes euthanasia and assisted suicide as “deadly forms of discrimination against old, ill and disabled people.” In their view, euthanasia and assisted suicide are dangerous practices because patients could be depressed, coerced, or vulnerable—conditions that could lead directly to abuse.

But if discrimination, questionable safeguards, and slippery slope possibilities are at the heart of Not Dead Yet ‘s rejection of euthanasia and assisted suicide, why are they not of equal concern with the withholding or withdrawal of  life-sustaining treatment?  If patients want to die earlier by removing a respirator, discontinuing antibiotics, or withdrawing nutrition and hydration, they are as potentially “vulnerable” as they would be when requesting a lethal injection in the Netherlands or an overdose of medication in Oregon.

Although the choices surrounding acts of commission and acts of omission could be similarly motivated by loss of autonomy, decrease in bodily function, or feelings of being a burden, Not Dead Yet only supports autonomous choice for passive treatment decisions (withholding or withdrawing life-sustaining treatment) that lead to premature death. 

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

Coping with ALS

Neurodegenerative disease is often cited as a reason for requesting assisted suicide or euthanasia. So insights into the motivations of profoundly disabled persons who want to live — like British physicist Stephen Hawking — are valuable.

Another victim of ALS in the same league as Hawking is Mario Melazzini, the new chairman of the board of the Italian counterpart to the FDA in the US. He has been in a wheelchair for 14 years and is completely dependent upon carers. Nonetheless he expresses an infectious optimism about life.

When I started to look at my disease with fresh eyes, I understood it and made a fresh start on life. The moment I stopped thinking about what I could not do because of ALS, but what I could still do for myself, for my children and friends, my life changed …

Life is a gift, an asset which must be nurtured from the moment of conception to natural end, even with illness. Life must not be manipulated according to an ideology. We need to realise that in any condition, when properly supported, everything can be seen as a great opportunity … The only incurable thing is the will to live!

More about Dr Melazzini here and here

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

Disability and dungeons in Philadelphia

Linda Watson   

Here’s another reminder – if you needed one — that caring for people with disabilities requires constant vigilance. Especially if they have no family ties, too often they are invisible to the government systems which are meant to protect them.

This sordid story comes from Philadelphia. Linda Weston was sentenced this week to life imprisonment for murder in aid of racketeering, kidnapping, sex trafficking and involuntary servitude. She and her associates imprisoned several disabled persons in dungeons in basements, attics and closets so that they could collect their disability cheques. The people were kept in the dark, starved, beaten and prostituted. Their food was laced with sedatives to keep them quiet. When food ran low, they had to eat human waste. Two of the victims died. This went on for ten years before some of the victims were discovered in 2011.

“Her future years in federal prison will be paradise compared to the conditions she imposed on her victims,” the sentencing judge said.

Amongst the many disturbing aspect of this story is that Linda Weston had served already served time for a similar crime. In 1981 Weston was sentenced to eight years in prison for starving a man to death after he refused to support Weston’s sister’s unborn child.

 Philadelphia was not the only city where her small gang operated. There were also dungeons in Killeen, Texas, Norfolk, Virginia, and West Palm Beach, Florida.

The group targeted mentally challenged individuals who were estranged from their families. Once they moved in, Weston became their representative payee with Social Security and began to receive their disability benefits and in some instances, their state benefits. 

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

Human Subjects Research “Vulnerability”

by J.S. Blumenthal-Barby, Ph.D., MA

Revisions are being suggested to the Federal Policy for the Protection of Human Subjects through the Notice of Proposed Rulemaking (NPRM). The changes being suggested are numerous (helpful summaries can be found here http://blogs.law.harvard.edu/billofhealth/2015/10/01/nprm-symposium-more-resources-now-from-ohrp/ and here http://blogs.law.harvard.edu/billofhealth/2015/09/30/nprm-symposium-resources-from-primr/). My aim is not to review those changes, but to point out a curious conceptualization of vulnerability affirmed in the NPRM.

Consider the following section (regarding conditions for IRB approval) of the original regulations:

46.111(b) – When some or all of the subjects are likely to be vulnerable to coercion or undue influence, such as children, prisoners, pregnant women, mentally disabled persons, or economically or educationally disadvantaged persons, additional safeguards have been included in the study to protect the rights and welfare of these subjects.

In the NPRM, this section is proposed to stay the same, and another section is being modified slightly to be consistent with it (suggested modifications to that section are bold italicized):

Section__.107 IRB membership.

(a) Each IRB shall have at least five members, with varying backgrounds to promote complete and adequate review of research activities commonly conducted by the institution. The IRB shall be sufficiently qualified through the experience and expertise of its members (professional competence), and the diversity of its members, including race, gender, and cultural backgrounds and sensitivity to such issues as community attitudes, to promote respect for its advice and counsel in safeguarding the rights and welfare of human subjects. The IRB shall be able to ascertain the acceptability of proposed research in terms of institutional commitments (including policies and resources) and regulations, applicable law, and standards of professional conduct and practice.

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: September (Part 2) by Melanie Boeckmann

Health, Risk & Society

Towards a better understanding of risk-taking: key concepts, dimensions and perspectives

Jens O. Zinn

The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.

‘Fuzzy’ virus: indeterminate influenza biology, diagnosis and surveillance in the risk ontologies of the general public in time of pandemics

Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson

Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy.

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: Prostitution, harm, and disability: Should only people with disabilities be allowed to pay for sex?

* Note that this entry is being cross-posted at the Journal of Medical Ethics blog.

By Brian D. Earp

Introduction

Is prostitution harmful? And if it is harmful, should it be illegal to buy (or sell) sexual services? And if so, should there ever be any exceptions? What about for people with certain disabilities—say—who might find it difficult or even impossible to find a sexual partner if they weren’t allowed to exchange money for sex? Do people have a “right” to sexual fulfillment?

In a recent issue of the Journal of Medical Ethics, Frej Klem Thomsen[1] explores these and other controversial questions. His focus is on the issue of exceptions—specifically for those with certain disabilities. According to Thomsen, a person is “relevantly disabled” (for the sake of this discussion) if and only if:

(1) she has sexual needs, and desires to exercise her sexuality, and

(2) she has an anomalous physical or mental condition that, given her social circumstances, sufficiently limits her possibilities of exercising her sexuality, including fulfilling her sexual needs. (p. 455)

There is a lot to say here. First, in order to figure out the merits of making an exception to a general ban on prostitution (for people with disabilities or for anyone else), we have to start by deciding what to think about the advisability of such a ban in the first place. For, if we don’t think it’s a good idea to begin with (spoiler alert: this is my own view), then we can skip all the talk about making exemptions, and just argue against the ban.

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

Prostitution, Harm, and Disability: Should Only People with Disabilities be Allowed to Pay for Sex?

By Brian D. Earp

Introduction

Is prostitution harmful? And if it is harmful, should it be illegal to buy (or sell) sexual services? And if so, should there ever be any exceptions? What about for people with certain disabilities—say—who might find it difficult or even impossible to find a sexual partner if they weren’t allowed to exchange money for sex? Do people have a “right” to sexual fulfillment?

In a recent issue of the Journal of Medical Ethics, Frej Klem Thomsen[1] explores these and other controversial questions. His focus is on the issue of exceptions—specifically for those with certain disabilities. According to Thomsen, a person is “relevantly disabled” (for the sake of this discussion) if and only if:

(1) she has sexual needs, and desires to exercise her sexuality, and

(2) she has an anomalous physical or mental condition that, given her social circumstances, sufficiently limits her possibilities of exercising her sexuality, including fulfilling her sexual needs. (p. 455)

There is a lot to say here. First, in order to figure out the merits of making an exception to a general ban on prostitution (for people with disabilities or for anyone else), we have to start by deciding what to think about the advisability of such a ban in the first place. For, if we don’t think it’s a good idea to begin with (spoiler alert: this is my own view), then we can skip all the talk about making exemptions, and just argue against the ban.

But Thomsen doesn’t pursue that route.

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.