Tag: child abuse

Bioethics Blogs

Should We Cure Genetic Diseases?

June 07, 2017

by Professor Bonnie Steinbock

Should We Cure Genetic Diseases?

In “Trying to Embrace a ‘Cure’,” (New York Times, June 4, 2017), Sheila Black notes that in the near future there may be a treatment that could amount to a cure for the genetic illness she and two of her children have — X-linked hypophosphatemia or XLH. Although XLH is not life threatening, it has significant disadvantages, including very short stature (short enough to qualify as a type of dwarfism), crooked legs, poor teeth, difficulty in walking, and pain. A cure would seem to be cause for celebration.

But Ms. Black is ambivalent about the prospect. Although she acknowledges the potential benefits both to individuals and to society, the issue is, for her, complex.

Having a serious disability may enable the development of certain virtues. She writes, “… to be human often entails finding ways to make what appears a disadvantage a point of strength or pride.” Or, as Nietzsche put it,  “That which does not kill us, makes us stronger.”

It’s very likely that having polio made Franklin Roosevelt emotionally more mature and strengthened his character, but would that be a reason to oppose the development of the Salk vaccine? Comedians often credit their talent from having been bullied as children; novelists and playwrights find inspiration in their awful childhoods. Admiring their ability to overcome adversity does not mean being ambivalent about ending bullying and child abuse.

Another reason is that disabilities have created communities that are a source of support and identity.

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 Blogs

BioethicsTV: 10/20 – Distributing organs, scope of practice, poverty, and kidnapping

by Craig Klugman, Ph.D.

Grey’s Anatomy (Season 13, Episode 5). In this episode June is an 80 year old woman who has been waiting for 3 years for a liver transplant. Her ship has finally come in and her children and grandchildren celebrate in her hospital room. But when Chelsea, a 25 year old runner, comes into the ER suffering from heat stroke that leads to acute liver failure, an internecine conflict develops between the surgeons. According to Meredith Grey, UNOS will allow June to forgo her liver and give it to Chelsea. June is a saint who cares and gives and nurtures. But when her surgeon, Bailey, asks June what she wants to do, June says that she wants her liver and the other girl can wait. A debate among the surgeons raises the question as to whether an 80-year-old should get an organ at the expense of someone who is young and has not had a chance to build an adult life. Bailey accuses Grey and Weber of ageism. Grey considers stealing the organ when it arrives, trying to coerce the patient to change her mind, or pretending to be Bailey so she can take the organ. However, in an only for TV moment, a patient undergoing a heart procedure not only dies after his procedure, but he’s an organ donor who is a perfect match. His liver saves Chelsea. Although the debate on age in distributing organs is an important one, the deus ex machine ending undermines the notion of organs as limited resources.

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

What is a moral epigenetic responsibility?

Guest Post: Charles Dupras & Vardit Ravitsky

The ambiguous nature of epigenetic responsibility

Epigenetics is a recent yet promising field of scientific research. It explores the influence of the biochemical environment (food, toxic pollutants) and the social environment (stress, child abuse, socio-economic status) on the expression of genes, i.e. on whether and how they will switch ‘on’ or ‘off’. Epigenetic modifications can have a significant impact on health and disease later in life. Most surprisingly, it was suggested that some epigenetic variants (or ‘epi-mutations’) acquired during one’s life could be transmitted to offspring, thus having long-term effects on the health of future generations.

Epigenetics is increasingly capturing the attention of social scientists and ethicists, because it brings attention to the importance of environmental exposure for the developing foetus and child as a risk factor for common diseases such as cardiovascular, diabetes, obesity, allergies and cancers. Scholars such as Hannah Landecker, Mark Rothstein and Maurizio Meloni have argued that epigenetics may be used to promote various arguments in ongoing debates on environmental and social justice, as well as intergenerational equity. Some even suggested that epigenetics could lead to novel ways of thinking about moral responsibilities for health.

Is it fair that disadvantaged populations are exposed to an inequitable share of harmful environments – such as polluted areas – that are epigenetically-detrimental to their health? Who should be held responsible for protecting children and future generations from epigenetic harm induced by their environments? Should we hold the parents accountable for detrimental epigenetic impact of their behavior on their 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

Joanna Kempner’s Not Tonight: Migraine and the Politics of Gender and Health by Christine Labuski

Not Tonight: Migraine and the Politics of Gender and Health

Joanna Kempner

University of Chicago Press, 2014, 232 pages

In her thoroughly engaging new book, Not Tonight: Migraine and the Politics of Gender and Health, Joanna Kempner argues that, despite a new clinical paradigm through which migraine has been transformed from a psychogenic to a neurobiological disorder, the condition remains “an opportunity to make jokes about moral character” (2). Grounding this assertion in the concept of a “legitimacy deficit,” (9) i.e., a gap between what sufferers experience and what biomedicine and broader society formally recognize as illness, Not Tonight demonstrates the synergistic roles that gender and perceptions of moral character can play in the lived experience of a disease condition, including its clinical management and representation. At its core, the book reveals how the virtual incompatibility between high moral character and a feminine gender impedes the social and clinical apprehension of migraine as a “real” disease condition.

Not Tonight is a fairly wide-ranging text. Across five chapters (each of which stand alone on their own merits), Kempner presents a set of interlocking variables through which the condition of migraine has thus far been understood: its social and clinical history; recent pharmaceutical advertising campaigns; online advocacy and activism; and the recent neurobiological turn in migraine care. In addition to online forums and blogs, much of Kempner’s fieldwork took place at clinical conferences where (mostly female) patients—as proxies for the specialty of headache medicine—were routinely maligned by clinicians, and where the neurobiological paradigm at the heart of her analysis has become institutionalized.

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

Pediatric Clinical Ethics Summer Internship (Minneapolis)

Proudly serving as Minnesota’s children’s hospital since 1924, Children’s Hospitals and Clinics of Minnesota, is the eighth-largest pediatric health care organization in the U.S. 

Each year, Children’s provides care through nearly 13,000 inpatient visits and more than 200,000 emergency room and other outpatient visits. An independent, not-for-profit health care provider, Children’s has 319 staffed hospital beds and services available in all major pediatric specialties: emergency care; newborn and pediatric intensive care; outpatient and inpatient surgery; diagnostic services, including radiology and laboratory; and special programs in the areas of respiratory, cardiology, cancer, premature birth, adolescent development, child abuse, and epilepsy. 

This internship (June – August) will provide an introduction to clinical, research and/or organizational ethics for qualified individuals with a particular interest in pediatric clinical ethics. In addition, to provide opportunities for qualified candidates to work on department based projects, develop potential publication opportunities, and work on personal interest research.

Clinical Ethics Internship Requirements:

  • Attend Ethics Case Consultations and Care Conferences
  • Round with the Clinical Ethicists in the Intensive Care Units and with other clinical services.
  • Attend educational sessions sponsored by the Office of Ethics.
  • Attend all meetings of the Bioethics Committee and Subcommittees.
  • Develop a personal research project for presentation at final Bioethics Committee meeting.
  • Attend the IRB meetings with Clinical Ethicists to understand research ethics
  • Participate in directed reading program developed with senior leadership in the Office of Ethics
  • Light office administrative work as needed

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 Stress in Mental Health Practice and Research

Dr. Adam Fried

By: Adam Fried, Ph.D.

Mental health practice, assessment and research can be highly fulfilling, but also emotionally demanding. In recent years, the field of psychology has made a concerted effort to educate psychologists about the effects of various types of caregiver stress (including secondary traumatic stress and vicarious traumatization in which the professional internalizes or is otherwise personally affected by the trauma experienced by those with whom the professional works) on their mental health and professional work (Collins & Long, 2003; Figley, 2002). Extreme cases can lead to a phenomenon known as compassion stress/fatigue (Figley, 2002), which can often be accompanied by a decrease in professional self-efficacy and a reduced willingness to help (Figley, 2002; Newell & MacNeill, 2010).

Stress can take many forms. One type that has received increased attention occurs when professional, institutional or legal rules and constraints prevent the practitioner from doing what they believe is right or most beneficial for the client/patient. Known as moral stress, these experiences describe ethical and emotional impasses experienced by professionals who may feel unable to provide the assistance they believe is truly necessary to address the client’s issues while also maintaining appropriate boundaries and adhering to ethics codes and laws.

Originally developed within the nursing community (Jameton,1984), this type of stress has been studied across many “helping” professions, including social workers, psychologists, and palliative care providers. Within psychology, it isn’t difficult to imagine a variety of moral stress situations within practice, assessment and research settings, although the nature of moral stress may differ in terms of the role of the professional, the setting and the nature of the mental health condition or focus of intervention.

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

Sexting for Your Health: Patients Send Genitalia Photos, Raising Legal Concerns

April 8, 2016

(The Guardian) – But medical ethicists expressed concern about the practice, because of the risk it could pose for doctors who treat people under the age of 18, arguing that because it is a form of telemedicine, it should only be practiced on a secure network, where it is protected under the federal health privacy information act, Hipaa. Concerns were also raised about the severe legal consequences that could arise for doctors, if the images could be construed as child abuse images. Health ethicist Lois Shepherd, at the University of Virginia, said exchanging photos like this is incredibly risky.

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

Prevalence of self-harm reflects our social isolation by Chris Millard

Since the late 1980s growing numbers of mental health professionals and media commentators in Britain and the USA have been concerned with a behaviour labelled as ‘self-harm’, ‘deliberate self-harm’ or ‘self-injury’. It is often seen as a secret or hidden practice, and it is almost always ‘on the rise’, especially among adolescent females. Most commonly it refers to self-cutting or self-burning, performed in order to relieve intolerable emotional tension or numbness.

In contrast, during the 1960s and ‘70s, the term ‘self-harm’ generally referred to somebody ‘crying for help’ by taking an overdose (self-poisoning). Now, it predominantly means regulating emotional tension by self-cutting or -burning. The ratio of cutting to overdosing in hospital statistics hasn’t changed very much, remaining around eight or nine to one in favour of self-poisoners. Why, in such a short space of time, have popular self-harm stereotypes shifted so dramatically?

The first thing to acknowledge in the face of this shift is that self-harm hasn’t always meant what we think it means. In the very recent past in Britain, ‘self-harm’ did not conjure up images of blood and cutting, but medication and overdosing. The ways in which we understand self-harm are both relatively recent and incredibly narrow.

This goes against some ideas of self-harm as timeless and almost mystical, which link it to religious self-flagellation, bloodletting, and even Tibetan tantric practices and the Passion of Christ – all of which focus on, or involve bleeding.

The term ‘deliberate self-harm’ was proposed in 1975 (as a new label) at a hospital in Bristol. It was used to describe a group of patients where 92 per cent had poisoned themselves (mostly with prescription or over the counter medication).

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: Chicago Med 3/29

by Craig Klugman, Ph.D.

BioethicsTV is an occasional bioethics.net feature where we examine bioethical issues raised in televised medical dramas.

Tonight marked the mid-season premiere of Chicago Med, a freshman television show that seems to relish throwing professional and bioethical issues at its audience. This week, viewers saw no fewer than 4 ethical challenges.

1. Blood draws for DUI in the ED. The first story was about a young man who crashes his car into a house. He is brought to the ED and needs immediate surgery for internal bleeding. Before he is brought to the OR, a police officer demands a blood draw because if they wait until after surgery, they won’t be able to prove he was drunk. The surgeon asks the patient if he consents to a draw and the patient says ‘no.” The charge nurse supports her staff and is then arrested for impeding an investigation. The officer says that having a driver’s license is consent and the nurse states that hospital policy requires patient consent. In this brief exchange, the nurse says that the hospital is where they treat patients, not make arrests.

As this show takes place in Chicago, it might be useful to look at the laws in Illinois. Under 725 ILCS 5/11-501.2, blood can be drawn in a secure location for the purpose of testing blood for a blood alcohol level. Someone licensed and trained in this procedure must collect the blood and a police officer must also be present. However, this type of draw requires the suspected person’s consent.

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.