Marshfield Clinic researcher featured in UN’s global albinism awareness campaign
MARSHFIELD — Murray Brilliant, Ph.D., a world-renowned researcher in human genetics at Marshfield Clinic Research Foundation (MCRF), is one of 12 people featured in the United Nations’ global campaign launched May 5 to raise awareness for albinism.
The campaign, “People with Albinism: Not Ghosts but Human Beings,” is spearheaded by the U.N. Human Rights Office to help people better understand what causes albinism and that social exclusion, stigma, and discrimination is unacceptable.
Brilliant first began studying albinism in mice, when he sought to answer the question, “Why are there so many different colors of mice?” His answer showed the genetic mutations that cause this variety in mice also are responsible for the most common form of human albinism.
Since then Brilliant has continued to study human albinism, including in Tanzania where it is estimated that one in 1,400 people have albinism and that one in 19 carries the gene. Brilliant, director of the Center for Human Genetics, MCRF, is considered one of the leading albinism experts worldwide.
“For me the responsibility doesn’t end knowing what the gene is or knowing what medication may help these people,” Brilliant said. “The responsibility is to ensure all human beings, regardless of their genetics, are afforded the same rights as any other person.”
Albinism is a rare, noncontagious, genetically inherited condition, which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin, and eyes, causing vulnerability to sun exposure. It is largely misunderstood socially and medically.
Brilliant’s research has included two clinical trials involving medicines aimed at improving the vision of people with albinism. Through his studies globally, he has seen firsthand how people with albinism are mistreated in some parts of the world.
“I’ve learned much from people with albinism,” Brilliant said, “who work very hard to overcome their limitations in vision and social stigma.”
To read Brilliant’s story and to see the video, visit albinism.ohchr.org/
For more information about the U.N.’s campaign, go to albinism.ohchr.org.