Tag: mental retardation

Bioethics Blogs

Genetic Issues at the London Sperm Bank

On December 29th, 2015, the Guardian reported that the London Sperm Bank is being investigated for discriminating against people with disabilities. The bank had turned away a man with dyslexia; it had published a 2010 pamphlet with a long list of disqualifying “neurological diseases,” including dyslexia, autism, ADHD, and other conditions.

Vanessa Smith—described as a “quality manager at the JD Healthcare Group,” the bank’s parent organization—defended the bank. Backpedaling without budging an inch, she said that the pamphlet had been withdrawn and policies would be reviewed. Still, little seems likely to change. According to Smith, “We are looking for someone who is medically clear of infectious diseases and genetic issues that may possibly be passed on to any resulting child.” She also claimed, “We definitely don’t work in eugenics.” She may mean something like, “In the popular mind, ‘eugenics’ is associated with Nazis, an association we wish to avoid.” But to shape future children, based on a policy that describes human variation as disease, is by definition eugenic. The bank’s currency is genes, and it wants good ones.

Smith’s grouping of “infectious diseases” with “genetic issues” is significant. Both are disqualifiers: in the view of the London Sperm Bank, they make the sperm unsuitable to produce a future human being. In the Guardian article, people with dyslexia were quoted, questioning the Bank’s criteria. My interest is less in the specific items on the list, or in the need for one—of course a prospective mother would prefer to have a child free of, say, hepatitis-C—than in the neutral, euphemistic vagueness of the phrase genetic issues, and the way it tends to pathologize human variation.

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

People First, Disability Second

Medicine does not need more cryptic language. And so upon discovering PFL, I did not celebrate the arrival of a new acronym in the world of health-care communication.

What PFL stands for, on the other hand, we should all celebrate.

PFL is short for People First Language, a movement to promote dignity and inclusion for people with disabilities. And unless you’re a headline writer with space limitations, there is no good reason to shorten it. So, Delaware legislators, lose the acronym. But keep the concept. By all means, keep that going forward.

I learned about Delaware House Bill 416 from legal scholar Thaddeus Pope’s blog.

“The legislation creates no new rights or duties,” Pope writes. “But like new legislation in many other states, it improves the vocabulary and terminology in existing law relating to people with disabilities.” 

Some changes are fairly subtle: from “the disabled” to “persons with disability.” Others replace insensitivity with respect: Gone is the term “mental retardation,” in favor of “intellectual disability.” The purpose is to promote dignity and inclusion. You’ll find a chart with more People First examples on Pope’s blog.

“This language emphasizes that individuals are people first, and that their disabilities are secondary,” according to a summary of the bill.

Understanding and clarifying language was pivotal to the Harvard Community Ethics Committee’s recent study of recipient selection criteria for pediatric organ transplantation.

The CEC wrote: “Neurodevelopmental disability, intellectual disorders, and related terms may hold clear meaning for medical professionals and, more particularly, within a transplant center, but they do not seem to mean the same thing from center to center, and certainly they held no consistent or clear meaning among the members of the Community Ethics Committee.”

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

From Uganda to NIH, to Solve a Seizure Mystery

Ugandan family members in a conference room

Caption: From left, translator Irene Nakamya; Alice Alanyo and infant son Hassan Komakech; Concy Lamunu and infant son Jovan Lokpol; Balbina Lamon; Domasco Okenyy; and translator Tom Azalia during the Ugandan family’s visit to the NIH Clinical Center in May 2014.
Credit: Maggie Bartlett, National Human Genome Research Institute, NIH

In 2012, NIH researcher Avindra Nath traveled to Uganda to investigate a mysterious illness striking children between ages 5 and 15 in Acholi—a remote region in the north of that African nation. More than 3,000 children in Acholi and villages in nearby Southern Sudan were suffering from “nodding syndrome.” Named for the drooping, or nodding, head typically seen in patients, the condition is characterized by seizures, staring, and varying degrees of mental retardation.

Dr. Nath, a neurologist and clinical director at NIH’s National Institute of Neurological Disorders and Stroke, and Dr. Thomas Nutman, an expert in parasitic diseases from our National Institute of Allergy and Infectious Diseases, along with experts from the Centers for Disease Control and Prevention (CDC) and the World Health Organization, have joined with experts in Uganda to try to identify the cause of this disease. If you are wondering why the NIH would be interested in a mysterious syndrome seen in this region of the world, it is because any disease that spreads rapidly is a global threat.

Although CDC studies had ruled out the possibility that a toxin or infectious agent alone directly caused nodding syndrome, Dr. Nath decided to investigate whether infection with a parasitic worm called Onchocerca volvulus might trigger changes in the bodies of these children that set the stage for the disease.

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.