Archives for March 2014

Medical research — it’s not what it used to be

A pipette dropping sample into a test tube,abstract science backJustine Dyer could be the poster-woman for 21st century medical research on people with intellectual disabilities. Justine is 26 years old, has Down Syndrome, lives in a house with two roommates and has a job.

She is also undergoing screening for a trial for a drug that could help improve her memory and language skills.

To be a part of the drug trial, Justine has to give what is known as “informed consent,” and that’s a tough requirement for anyone with cognitive disabilities.  Historically, researchers and doctors have provided subjects with lengthy and complicated consent forms, making it difficult if not impossible for people like Justine to understand what they are signing up for.

Typically, they relied on a parent or guardian to make the decision for them and that was problematic. Ethical scientists want their subjects to fully understand all potential consequences of being in a drug trial.

Informed consent simplified

Researchers think they may have found a way to help trial participants better understand. Using pictures, cartoons and simplified language, doctors and scientists have created consent documents custom-made for people with intellectual disabilities.

I love what Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, says about the efforts underway.

“This is an era of participatory research,” he says. “We do not want to do research on people with Down Syndrome. We want to do research with people with Down Syndrome.”

This mindset and the commitment to working with individuals who have an understanding of what they are agreeing to is a far cry from the days when medical research was conducted at residential institutions for people with intellectual disabilities.

What happened at Willowbrook

The most famous of these research efforts occurred at Willowbrook State School on Staten Island, New York, in the 1950s. The lead scientist Dr. Saul Krugman has been almost universally condemned for his studies of hepatitis at the state school, home to thousands of children with intellectual disabilities.

After receiving consent from the parents of participating children, Krugman had the youngsters injected with a mild form of hepatitis. He was testing a theory that the body can build up its own antibodies to hepatitis in the same way that it does to polio.

Krugman’s study was far more complex than is described here, but it is fair to point out that he had been brought to Willowbrook to come up with ways to halt the spread of hepatitis at the school.  As a result of his work the incidence of hepatitis at Willowbrook was reduced by 85 percent.

Nevertheless, a positive outcome does not excuse unethical research.  There are plenty of arguments both for and against what Krugman did. And the result of the controversy and the difficulties with informed consent has been a reluctance by scientists to conduct studies that would benefit this population.

It’s a sign of the times and the progress that’s been made that people like Justine can fully participate in beneficial studies that help individuals like her. And it’s long overdue.

Disability newsbits

Deja vu revisited

Every once in awhile, public discourse focuses on the pros and cons of euthanasia. The issue is in the headlines in Belgium right now because that country’s Senate has voted to allow euthanasia for terminally ill children.

As the New York Times points out, euthanasia for children has been taboo in most countries ever since Nazi Germany put to death thousands of mentally and physically handicapped children during what was known as Kinder Euthanasie.

The Germans weren’t the only people who believed that so-called “defective” children should be eliminated. There was a strong eugenics movement in the United States 100 years ago and one of its results was that many states passed sterilization laws. These laws were designed to ensure that people with disabilities, those who were poor and others who lived on the edges of life could not reproduce.

There were also news stories about doctors who refused to treat newborns who had deformities. In one such case, a doctor in Chicago allowed a baby boy to die because his head was fused to his shoulder and he was born with a closed intestine. The child’s parents agreed with the doctor’s decision.

A hundred years later, we’re still debating the issue in some form or fashion.

Healthy lifestyles for people with disabilities

This is the final week for Paralympics in Sochi, and many people many not be clear on who these sporting events are for. The Paralympics are for individuals with physical disabilities. Competitors do not have intellectual handicaps, as do those who participate in the Special Olympics – a completely separate set of games.

As the Montreal Gazette points out, even though Special Olympics has been around for many decades, its focus has not necessarily been on healthy lifestyles for people with intellectual disabilities. These individuals often take more medications than people in the general population, yet they are not as likely to get routine exams for eyes, teeth and ears.

“Sport, health and healthy lifestyles can become powerful vectors in promoting the inclusion and social participation of people with an intellectual disability,” wrote Diane Morin, holder of the Chair of Intellectual Disabilities and Behavioural Disorders at the Université du Québec á`Montréal.

For that reason, it’s good to read that Special Olympics Quebec is offering special health clinics for athletes.

A teaching hotel

You’ve heard of teaching hospitals. How about a teaching hotel? My hat’s off to Marriott Hotels for its plans to build a hotel in Muncie, Indiana, staffed in part by people with disabilities.

The hotel will double as a training facility for individuals who want to go into the hospitality and food service industries. At the same time, it will provide training for human resource professionals in how to hire more employees with disabilities.

The idea for the hotel came from a dad who was frustrated at the lack of postsecondary opportunities for his son, who has Down Syndrome.

I hope to read more stories like this in the future as people with disabilities become more a part of our everyday lives. Read more about what the Brookwood Communities in Houston and Georgetown are doing to provide postsecondary work opportunities for people with intellectual disabilities on my previous blog post.