Tag: personal autonomy

Bioethics Blogs

Are you a person or an animal?

The question in the title may sound like an insult. That is, not as a question, but as something one might say in anger to reprimand someone who misbehaves.

In philosophy, the question is asked seriously, without intention of insulting. A philosopher who misbehaves at a party and is reprimanded by another guest – “Are you a person or an animal?” – could answer, shamelessly: Eh, I really don’t know, philosophers have contemplated that question for hundreds of years.

What then is the philosophical question? It is usually described as the problem of personal identity. What are we, essentially? What constitutes “me”? What holds the self together? When does it arise and when does it disappear?

According to proponents of a psychological view, we (human beings) are persons with certain psychological capacities, such as self-awareness. That psychology holds the self together. If an unusual disease made my body deteriorate, but doctors managed to transplant my mental contents (self-awareness, memories, etc.) into another body, then I would survive in the other body. According to proponents of the rival, animalist view, however, we are animals with a certain biology. An animalist would probably deny that I could survive in a foreign body.

The difference between the two views can be illustrated by their consequences for a bioethical question: Is it permissible to harvest organs from brain-dead bodies to use as transplants? If we are essentially persons with self-awareness, then we cease to exist when the brain dies. Then it should be permissible to harvest organs; it would not violate personal autonomy.

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

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their 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

Memories Shouldn’t Last a Megabyte

By: Shari Esquenazi

Imagine a world where you can take a picture of anything you desire with just your eyes. You can keep these images stored forever on a wireless device, immediately and infinitely retrievable.  Sounds great, right?

Recent scientific advancements have made contact lenses that are embedded with small cameras a reality. Such forthcoming technologies tend to bring an abundance of ethical considerations with them. 

Google’s “Glass” was the first step toward eyewear that can record photos and video. The tech giant applied for a patent for a contact lens camera in 2014.  Last year, Sony filed a similar patent for a contact lens-embedded camera. While these contacts have a variety of practical uses which both benefit individuals and the overall society, they are not without their faults.

This technology would be undeniably valuable in innumerable situations. A witness to a crime could take a photo that defends the word of a victim, trimming down court cases and protecting innocent citizens in society. A surgeon who finds herself in a problematic operation could live stream the images to another specialist for advice on how to quickly and safely remedy the situation and save a life. 

While the technology has unparalleled benefits, there are ethical concerns that need to be deeply weighed before a person opts for such a capacity in day-to-day life. A brief bioethical analysis illustrates these concerns. 

The existential and ethical theory of transhumanism is the belief that the human race can evolve beyond its current physical and mental limitations, particularly by means of science and technology.

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 germline gene editing full report—a bit more

As Steve Phillips pointed out yesterday, the National Academies of Science, Engineering, and Medicine has published, in book form, its full report on “Human Gene Editing: Science, Ethics, and Governance.”  On Valentine’s day.  (I suppose it’s not so ironic.)  The entire report may be downloaded for free through this link.  Also available at that page are links to a 4-page summary report and to one-pagers on different aspects of the report.  I urge interested readers to follow the link to the National Academies’ website and read at least the executive summaries.  

Steve asks whether heritable gene editing in humans has “compelling” support, and argues not.  Regular readers of this blog will know that I have agreed, arguing this is a road we ought not to travel.  There have been numerous posts on this blog, notably in 2015, including the December 3, 2015 post with embedded links to other 2015 posts on the subject.  Rather than repeat those here I invite the reader to follow the breadcrumbs.

Steve’s take is that, because of unknown risks to an affected unborn child, editing of said child at the embryo stage, or perhaps even at the germ cell stage, prior to fertilization, should not be undertaken.  The argument FOR doing it is that, in very limited cases in which there is a well-known, single-gene defect whose effects are devastating and for which treatment alternatives are absent or inadequate, parents desiring to have an unaffected child could ethically avail themselves of a gene-editing approach.

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

BioethicsTV (November 2016) Continued: Further commentary on Informed Consent

by Abhi Amarnani

Chicago Med (Season 2, Episode 8, 11/10/16).

A December 1st BIOETHICSTV blog post briefly mentioned, Season 2, Episode 8 of Chicago Med. The post notes that the episode dealt with the issues of informed consent in brief. I felt that a more in-depth discussion of these issues was warranted. Consider the storylines in the episode: A young girl with a developmental disorder needs cardiac surgery. Her condition forces her mother to question whether the girl can make decisions for surgery. Second, Nurse April was coughing at the end of episode 7, and viewers learned that she is diagnosed with multidrug resistant tuberculosis (TB). Adding to this challenge is a confirmation of pregnancy. Her colleagues question her personal autonomy when she considers refusing treatment. Third, a patient dying from kidney disease is not allowed by hospital policy and law to accept a transplant from his HIV+ brother. The message is that death from organ failure is preferable to a longer life with HIV. By the end of the episode, Dr. Manning leaves a syringe on the table stating: “If you already had HIV, the procedure would be legal,” insinuating a workaround – that if the patient infects himself with his brother’s blood, then the transplant can happen. The donor and recipient acknowledge fully informed consent that receiving an HIV positive organ will infect him, but here the informed consent consideration comes up against the “do no harm” principle of medicine and United Network for Organ Sharing (UNOS) policy.

In the first storyline, a friendly, bubbly and trusting teenage girl, Karina, enters the hospital with cardiac issues.

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

Pedophilia: Prevention or Paternalism?

by Mike Reaves

“There is no cure, so the focus is on protecting children.”[i]

Harvard Medical Health Letter, July 2010

Pedophilia, or the sexual attraction to children who have yet to reach puberty, continues to perplex clinicians and researchers in the 21st century. There is often much confusion surrounding this term, as society commonly groups pedophiles alongside child molesters. However, not all persons with these sexual interests actually act on them. Many individuals who have these sexual preferences stay celibate their entire lives. While there may be no cure for pedophilia, there are new treatment options that may be available to the public in 2018.

Researchers at Karolinska Institute in Sweden are attempting to fund a full-scale scientific drug trial that may provide hope for those seeking treatment. Dr. Christoffer Ramm is the principal investigator of this research study; his background includes research on the neuropsychological aspects of psychosis. His team refers to their work with the acronym PRIOTAB, or “Pedophilia at Risk – Investigations of Treatment and Biomarkers,” a collective that seeks to make society safer – both for children and those who suffer from these complex disorders. In their study proposal, Priotab notes that in Sweden 10% of boys and 5% of girls are sexually assaulted; and individuals with pedophilic disorder commit 50% of these assaults.[ii] The Priotab team claims that they can repurpose the pharmaceutical drug Degarelix, which has typically been used to treat prostate cancer. The team believes an effective treatment will reduce the social stigma associated with seeking treatment for pedophilia and also protect those who cannot protect themselves.

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

Why should we respect conscientious objectors?

A powerful debate over conscientious objection is brewing in Canada. The Canadian parliament is drafting a law to implement a Supreme Court order to allow assisted suicide and euthanasia. Some doctors fear that they will be forced to perform the procedures or refer patients to more compliant doctors.

Writing in the Canadian Family Physician, Dr Nancy Naylor, a general practitioner, declared that she had decided to retire:

“I refuse to let anyone or any organization dictate my moral code. For this reason I am not renewing my licence to practice medicine . I have practiced full scope family medicine , including palliative care for the past 37 years and solely palliative care for the past 3 years. I have no wish to stop. But I will not be told that I must go against my moral conscience to provide standard of care.”

Appeals to conscience are emotionally powerful. But do doctors have a right to appeal to their “moral conscience” to refuse to carry out legal procedures?

Today one of Canada’s most influential bioethicists and a colleague present the case for ignoring conscience claims in the Journal of Medical Ethics. Professor Udo Schuklenk, who is also editor of the journal Bioethics, and Ricardo Smalling, both of Queen’s University in Ontario, contend that “Forcing patients to live by the conscientious objectors’ values constitutes an unacceptable infringement on the rights of patients.”

In a nutshell their argument is that medical professionals have made a contract with society. In return for a lucrative monopoly on the provision of an essential service, patients have a right to demand that they provide socially acceptable and legal services.

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

Is there an ‘African bioethics’?

Well, is there? There have been a number of published attempts to isolate what is different about African ways of identifying, analyzing and resolving ethical issues related to health and medicine. Usually there is talk of African communitarianism, solidarity and Ubuntu, to be contrasted with the typically ‘Western’ emphasis on personal autonomy. But as time goes on, this whole narrative seems more and more contrived and out of step with reality. We know autonomy has limits, and does not automatically trump other considerations in cases of moral conflict.  The stress on communal life and social harmony in African morality has similarly been oversold: contemporary ‘African life’ is not predominantly lived in villages led by traditional elders where communal problems are resolved by palabre under a baobab tree. That image is becoming increasingly quaint against the influences of colonialism and globalization, increased urbanization, digital communication, and the subsequent fraying of traditional community structures.
A couple of recent articles probe into what an African bioethics might mean. In Developing World Bioethics, Gerald Ssebunnya arguesthat the pursuit of a distinctly African bioethics is basically a fool’s errand. According to Ssebunnya, the whole idea that an African bioethics exists – or ought to – comes from Africanist philosophy and the desire to distance African philosophical thought from that of their past colonial masters and oppressors. Unfortunately, he writes, that meant falling back on what he calls ‘ethno-philosophy’, which consists of two main activities: (a) unreflectively recycling bits of common morality and (b) polemically talking about the nature and need of African philosophy rather than actually doing it.

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

Unadorned: My Testament

by Steven Miles, MD

Many of you in the Bioethics community know me as a physician-ethicist. Early in my career, in the 1980s, I was prominent in the ethics and practice of end-of-life care. I published extensively on that topic before moving on to other topics. As an internist and geriatrician, I had decades of experience in hospitals, clinics, nursing homes and hospices. As a physician who disproportionately worked with dying persons, I have a greater than normal skepticism of the utility of aggressive technology and heightened insights into the nature of institutionalized life.

At sixty-six years of age, I am not currently ill excepting for incrementally increasing mild chronic diseases—harbingers of the approaching cold front. This past year, I lost close friends and family. Some planned well, others not so well. It has been trying. My wife of thirty-four years and my children have asked about how to update advance directive in light of these difficult experiences with a medical system that still clumsily accommodates human mortality. One of my kids was surprised to learn that I had an advance directive and kept it in an unlocked fireproof, waterproof box in our home. We had talked about it several times before.

The experiences of the past year have made me realize the implications of the likelihood that I am in my last decade of being able to teach through written and spoken word. For me, this realization has made my more forthright, and less inclined to the dilly-dally polite talk of those who believe that they can (or will) speak frankly later.

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

Ethics & Society Newsfeed: February 12, 2016

When the hospital serves McDonald’s
In peddling unhealthy meals, health centers fail both their patients and their employees.

Pharma Bro goes to Washington
A Congressional hearing with Martin Shkreli reveals the brokenness of the prescription-drug market.

The research pirates of the Dark Web
After getting shut down late last year, a website that allows free access to paywalled academic papers has sprung back up in a shadowy corner of the Internet.

Johns Hopkins becomes first center in country to offer HIV-positive to HIV-positive organ transplants
Johns Hopkins announced this week that it had received approval from the nation’s organ-sharing authority to become the first hospital in the United States to conduct transplants involving HIV-positive donors and HIV-positive recipients.

‘Zika isn’t important’: The infuriating case of a scientist’s search for funding
Brian Foy said in a 2011 paper that he found likely evidence of a little-known virus called Zika spreading through sex. He wanted to study it further, but no one would give him the funding he needed.

Study links sleeplessness and false confessions
Sleep deprivation may lead individuals to confess to crimes they did not commit, new research suggests.’

As Flint fought to be heard, Virginia Tech sounded alarm
Young scientists were among the first to warn of the alarming levels of lead in Flint’s water.

Telling women of reproductive age not to drink is fear mongering
The CDC is suffering backlash over recent recommendations that all women who want to become pregnant should avoid drinking completely.

Doctor convicted of murder for patients’ drug overdoses gets 30 years to life in prison
A judge sentenced a doctor to 30 years to life in prison because she prescribed painkillers to drug addicts.

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.