Tag: altruism

Bioethics Blogs

‘Being a burden’: a illegitimate ground for assisted dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Court of Appeal. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives ones private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include are intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time, and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers.

A recent systematic review of the literature concluded that 19-65% of terminally ill patients felt that they were a burden to others.  The 2016 Report relating to the Oregon Death with Dignity Act  concluded that 48.9% of patients whose lives were ended under the Act cited seeking an assisted death cited ‘being a burden’ as one of their concerns.

Concern about being a burden should not be a criterion to which any law relating to assisted dying should be permitted to have regard.

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 – April 2017 by Danya Glabau

Critical Public Health

On difference and doubt as tools for critical engagement with public health

Catherine M. Will

This paper argues that critical public health should reengage with public health as practice by drawing on versions of Science and Technology Studies (STS) that ‘de-centre the human’ and by seeking alternative forms of critique to work inspired by Foucault. Based on close reading of work by Annemarie Mol, John Law, Vicky Singleton and others, I demonstrate that these authors pursue a conversation with Foucault but suggest new approaches to studying contemporary public health work in different settings. Proposing that we ‘doubt’ both the unity of public health and its effects, I argue that this version of STS opens up a space to recognise multiplicity; to avoid idealising what is being criticised; and to celebrate or care for public health practices as part of critique. Finally I oppose the view that considering technologies, materials and microbes leads to micro-level analysis or political neutrality, and suggest that it allows us to reframe studies of public health to account for inequalities and to draw attention to weak or retreating states, active markets and the entangled relations of humans and non-humans across the world.

 

Biopolitical precarity in the permeable body: the social lives of people, viruses and their medicines

Elizabeth Mills

This article is based on multi-sited ethnography that traced a dynamic network of actors (activists, policy-makers, health care systems, pharmaceutical companies) and actants (viruses and medicines) that shaped South African women’s access to, and embodiment of, antiretroviral therapies (ARVs).

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–March 2017, Part I by Julia Kowalski

Here is Part I of our March article round-up.

American Anthropologist

A Dog’s Life: Suffering Humanitarianism in Port-au-Prince, Haiti

Greg Beckett

In the Bel Air neighborhood of Port-au-Prince, Haiti, most residents are dependent on humanitarian and foreign assistance for food, services, aid, and jobs. Yet, some residents feel that the conditions under which such aid is provided actively blocks their ability to live a life they find meaningful. In this article, I explore how some Haitians theorize this humanitarian condition through the figure of the dog, an animal that exemplifies, for Haitians, the deep history of violence, dehumanization, and degradation associated with foreign rule. I then contrast this with how foreign aid workers invoke the figure of the dog to illustrate their compassionate care for suffering others. Drawing on research among Bel Air residents and foreign aid workers in the years after a devastating earthquake destroyed much of Port-au-Prince, I show how the figure of the dog is central both to Haitian critiques of humanitarian aid and to the international humanitarian imaginary that responds to forms of suffering it deems cruel.

Biosocieties

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

Michelle L. McGowan, Suparna Choudhury, Eric T. Juengst, Marcie Lambrix, Richard A. Settersten Jr., Jennifer R. Fishman

This paper investigates how groups of ‘citizen scientists’ in non-traditional settings and primarily online networks claim to be challenging conventional genomic research processes and norms. Although these groups are highly diverse, they all distinguish their efforts from traditional university- or industry-based genomic research as being ‘participant-driven’ in one way or another.

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: Moral enhancement by Jane Roberts

This month’s web round up focuses on notions of treatment as enhancement…or vice versa? I’ve recently come off a stretch of spending quite a lot of time reading up on debates surrounding behavioral disorders in children. One issue that seems to crop up repeatedly is whether the use of medications in these young populations, particularly those living with ADHD, is merely treatment for the problem, or increasing the normalization of enhancement in an era where, for many, being ‘enough’ just isn’t enough anymore .

A recent article proposed that the millennial generation is more concerned with self- improvement and holds higher self-expectations than any generation before. Academic and social pressures, especially in those who have spent more of their formative years on social media, play into a wider societal expectation that one should be the best that they can possibly be using whatever means are available. The use of medications like Adderall for treatment of ADHD has long been indicated, but in this era of striving for self- improvement, such medications have moved from the realm of treatment to that of performance enhancer. The rise of the good grade pill is how the New York Times characterized a trend in high school students taking Adderall to gain an academic edge, while a growing percentage of doctors are willing prescribe Adderall to help in school, especially to those kids who are at an economic disadvantage.

This idea of academic performance enhancement via pharmaceutical means has been with us for a while, but what seems to be having its moment now is the notion of moral enhancement- the very sci-fi sounding possibility that behavior can be changed to something more morally acceptable through the use of a pill.

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

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make.

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

Would You “Donate” Your Kidney for $1,000?

Crossposted from Rising to the Challenge, The Campaign for Johns Hopkins

 

Nearly 100,000 Americans sit on the waiting list for kidney donations, but only about 17,000 of the organs are transplanted each year — despite the fact that living donors can provide kidneys. What could help close the gap between the need and the supply? Might providing some kind of altruistic incentives or financial compensation for donors be a step toward saving thousands of lives, and with what ethical implications?

 

That thorny question is one of nine that Hopkins faculty are examining with Exploration of Practical Ethics grants administered by the Berman Institute of Bioethics. Established in part by a generous gift from university trustee Andreas Dracopoulos, the program funds one-year pilot studies that address key questions in professions and scholarly disciplines, within institutions, and throughout society.

 

“Research institutions like Hopkins are perfect for this kind of inquiry, because we don’t just produce graduates who can go out into the world and solve these problems. We produce the thought processes that inform the way future leaders will make decisions,” says Maria Merritt, an associate professor in the Berman Institute and Bloomberg School of Public Health. Merritt is overseeing the portfolio of funded awards in her role as program officer for the Exploration of Practical Ethics effort.

 

Vikram Chib and Mario Macis

 

Informing the debate over the ethics of payments for organ donation is the goal of a project proposed by Mario Macis, an associate professor in the Carey Business School, Vikram Chib, an associate professor in the Whiting School of Engineering, and Nicola Lacetera, an associate professor at the University of Toronto.

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

Commercialization, but not at any price

In a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

This post in Swedish

We recommend readings - the Ethics Blog

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 pharmaceutical industry and altruism

I am currently thinking about a common gut reaction to the pharmaceutical industry. I sometimes have this reaction too, so this is an examination of my own reaction.

The reaction is a feeling of discomfort, when a central actor in the management of something as important as human health and disease is a multibillion-dollar industry with profit as overall goal.

Is it really possible to combine such a businesslike aim with a genuine desire to cure the sick?

Let us compare with another industry that radiates more compassionate desire to cure, namely, alternative medicine. Here too products are sold to people with various ailments. There is clearly a market and a business mindset. Yet the actors on this market radiate more love of mankind. It can sometimes even appear as if the products were manufactured and sold out of pure goodness!

What makes these business practices seem imbued with good will to cure? I suggest that it depends on the strong belief in the healing effects of the products. I do not deny that many of the products have beneficial effects. My point is only that beliefs about good effects are at the forefront and can make the provision of the products appear like an ethical act of noble actors.

The pharmaceutical industry is different from alternative medicine partly through being prohibited from being permeated with beliefs about the healing effects of the products. It is actually illegal for the pharmaceutical industry to act as nobly and compassionately as the actors within alternative medicine. It could invite quackery.

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

Crossing the Line: When Doctors’ Beliefs Endanger Patients’ Autonomy and Health

by Craig M. Klugman, Ph.D.

In 2016 the Illinois legislature passed and Governor Bruce Rauner signed into law Public Act 099-690 (SB 1564), an amendment to the Health Care Right of Conscience Act. This change states “It is also the public policy of the State of Illinois to ensure that patients receive timely access to information and medically appropriate care.” The change requires physicians to inform patients about legal treatment options including their factual risks and benefits, but does not require the physician to perform such services. If the hospital or physician has a conscientious objection to performing a procedure, then the patient must be referred to or transferred to someone or some facility that will.

For this effort, state officers have been sued in both state and federal courts by the Alliance Defending Freedom on behalf of a group of “pregnancy centers,” a doctor and her medical practice in Rockford, IL. Their complaint is that this law “forces them to promote abortion regardless of their ethical of moral views.” In other words, because the law requires doctors to allow patients to know all of their legal options indicated under standard of care and to be transferred elsewhere for services a physician or facility will not perform, this violates their religious freedom. The plaintiffs want it to be legal to lie, obfuscate, and keep information from patients and to keep patients away from legal and safe, medically indicated procedures. Specifically, this suit cites abortion.

Most surprisingly, a judge in a rural county has issued an injunction against the law going into effect (only) for the named plaintiffs.

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

Altruism, Ethics, and Markets

Mario Macis, PhD, together with Vikram Chib, PhD and Jeffrey Kahn, PhD, MPH were awarded funding by the JHU Exploration of Practical Ethics program for their project titled “Altruism, Ethics and Markets: A Behavioral and Neuroscientific Experimental Study.” This is an experimental study at the intersection of ethics, economics and neuroscience that addresses controversial economic transactions, such as receiving financial compensation for organ donation. The research team will create an experimental laboratory setting that reproduces several of the features of organ donation, and will study the ethical and economic implications of different institutional regimes of procurement. By measuring neural activity (through fMRI) and behavior, this study will provide insight into how altruism, the desire for economic gain, and the tolerance for physical pain interact to produce outcomes. The study will also consider how those interactions depend on institutional arrangements and will examine the neural mechanisms associated with people’s preferences.

 

Dr. Macis answers our questions.

 

Explain the different scenarios in which participants can “donate” in this experiment.

 

Participants are presented with three scenarios. In the first two scenarios, in exchange for a physical cost (i.e., pain from an electric shock), participants will have the possibility to earn some money for a charity of their choice (“pure altruism”), or for both a charity and themselves (“paid altruism”). In the third scenario, participants are given the opportunity to transfer a certain amount of their endowment as a payment to another person who agrees to take a given shock, and a charity receives a given sum of money (“market”).

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.