A recent study indicates more people would donate their eyes for research if they knew the option was available.
A Duke University research team found that although eye donations for research declined between 1997 and 2004 by 28%, a survey of about 200 patients waiting for appointments at the Duke Eye Center indicated 90% reported they would donate their eyes after death.
People can choose to donate their eyes to doctors who can transplant their corneas, the top layer of the eye, to another person, or donate them for research.
When researchers are able to study donated eyes with diseases or defects, they can look for cures or treatments for those ailments, says Chuck Pivoney, CEO of Midwest Eye-Banks, a non-profit collection of eye banks dedicated to the restoration of sight.
Pivoney says eye tissue for research is in high demand. Last year, the Midwest Eye-Banks had 5,000 donors for surgical intent, but only 313 patients donated eyes for research.
"I talked to families for decades and the one thing that reigns true (is) ... people with retinal eye diseases especially say, 'I didn't realize that I could donate,'" he said. "That means we're not doing a good enough job in getting that word out."
The Duke study found 55% of those surveyed said they would sign up for a research registry, a potential solution to the scarcity of tissue that is available to study. Patients with eye afflictions would sign up to donate their eyes to research, giving doctors more time to document their eye conditions and find a researcher who can best use the diseased eye for scientific study after the patient's death.
Studying diseased eyes can help researchers find better treatments for disorders such as macular degeneration - sight loss related to aging - or glaucoma - damage to the eye's optic nerve - Pivoney says.
Michigan State University medical student Andrew Williams, who is on the Duke survey research team, says reasons patients choose not to donate their eyes can include fear it would disrupt their funeral arrangements, and simply thinking the procedure is gross. Yet he says the most common reason patients give is no one ever asked them to donate.
"People don't necessarily think about this," he says. "They felt their eyes were too diseased to donate. ... That's definitely not the case for research."
The research indicates 77% of those surveyed were not registered as an eye donor for non-prohibitive reasons, such as never having been asked to donate or feeling as if their eyes are too old to donate. About 15% reported that they are unregistered for prohibitive reasons, including a desire to maintain body integrity, religious reasons and concerns about how it would affect their afterlife.
The survey also asked patients how they would want to receive information about donating their eyes.
Of those asked, 41% patients preferred learning about it from their eye doctor, 37% wanted to learn from a pamphlet and 4% preferred information from their family doctor.
"As eye doctors, we hesitate to have any conversation like that with our patients," says Kelly Muir, assistant professor of ophthalmology at the Duke Eye Center who was on the survey team. "This was a wake-up call for me, that my patients want to have this conversation with me."
Williams says donors aren't the only ones involved in the decision. The survey team found 95% of families would support their relative's choice to join the research registry.
After the survey, Muir says the next step is finding ways to fill researchers' need for eyes to study. Working with eye banks and organ-donation groups, she says creating a registry specifically for eye research could give doctors the leg up they need to find cures for eye diseases and defects.
"Eye donation affects a large population," Williams says. "It has the potential to make a big difference in the world of research."