【904-905】白化病妇女争取被接受&WHO Calls for Gene Editing Registration
WHO Calls for Gene Editing Registration
Tedros Adhanom Ghebreyesus, director general of the World Health Organization (WHO), speaks during a meeting with Chinese Foreign Minister Wang Yi at the Ministry of Foreign Affairs in Beijing, Tuesday, July 17, 2018. (AP Photo/Mark Schiefelbein, Pool)
World Health Organization experts said last week it would be irresponsible for any scientist to do human gene-editing studies in people. They also called for a central registry of gene-editing studies to make sure scientists are open and honest about their work.
The WHO group was set up three months ago after a Chinese scientist announced he had edited the genes of twin babies. They met for the first time last Tuesday in Geneva, Switzerland.
The group said it had agreed on a way to set rules for gene-editing research. It also asked the WHO to start setting up a registry for such studies immediately.
“The committee will develop…guidance for all those working on this new technology” said the WHO’s chief scientist, Soumya Swamanathan.
Last year, a Chinese scientist claimed to have edited the genes of two baby girls. They were born to the same mother in the same pregnancy.
News of the births led to condemnation from around the world. Many people believed it might be the start of “designer babies,” children whose genes have been edited to give them desirable traits or qualities.
Scientists and ethicists from seven countries called recently for a suspension of gene editing that would result in genetically-altered babies. They warned the process could have permanent and possibly harmful effects on human beings.
The WHO group said in a statement that any human gene editing work should be done for research only. It also said trials of gene-editing should not be done on humans.
The WHO’s director-general, Tedros Adhanom Ghebreyesus, welcomed the group’s plans. “Gene editing holds (great) promise for health, but it also poses some risks, both ethically and medically,” he said.
The group said it aims over the next two years to produce governance rules for national, local and international officials to make sure that human genome editing science progresses within agreed ethical limits.
I’m Susan Shand.
The Reuters News Agency reported this story. Susan Shand adapted it for VOA Learning English. George Grow was the editor.
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Words in this Story
irresponsible – adj. said or done with no sense of responsibility
edit – v. to make changes, correct mistakes
ethics – n. rules of behavior based on ideas about what is morally good and bad
pose – v. to put in place; to create
AS IT IS
Women with Albinism Struggle for Acceptance
Stibiri Fiona of Uganda was born with the medical condition known as albinism.
Her body lacks the natural dark brown or black coloring that is in the skin of many African people. As a result, she and others with the condition have unusually light skin, hair and eyes.
In many countries, centuries-old beliefs about people with albinism create danger for those like Fiona. For while the medical cause is understood, the body parts of those with albinism are used in ceremonies that are said to bring wealth and good luck. People who want those body parts then attack individuals with the condition: cutting off their hair, fingers, arms, ears, and even murdering them.
"Someone who abuses my nature, I feel so, so, so bad and so small. I feel like even shedding tears. I feel like going even to collect my mother in the grave to ask her why she produced me in such a color."
Life is difficult for Ugandan women with albinism. One person who helps them is Nawejje Doreen Mayanja, who heads a group called Women and Children with Albinism. She works near the city of Kampala.
"When you are qualified, it is a bit competitive to get a job. And just because most of these women were denied the chance to go to school, they are not educated, they are not empowered. You find they are living below the poverty line."
Albinism is a genetic condition. In addition to having little coloring in the skin, people with albinism may have problems with their eyesight and are at a higher risk for skin cancer.
Working as a primary school teacher, Fiona was married for eight years and has four children. Her husband asked her to stop working because he believed her albinism would make him rich.
When that did not happen, she says his father ordered her to leave their home. Now she lives in a one-room house with her children. She has not been able to find a teaching job.
"When I went there to apply for vacancies, they refused. They said children will fear you. Even other teachers looked at me as maybe a curse. So, as for now, I don't work."
A 2017 United Nations report says that people with albinism face discrimination and barriers that prevent them from taking part equally in society. As a result, they are more likely to experience social exclusion and poverty.
Safia Nalule is a member of Uganda’s legislature. She represents people with disabilities. On March 7, she offered a bill in parliament on the social, economic and cultural rights of people living with albinism.
"I am bringing this bill, first of all, to ask for great awareness raising about persons with albinism. That they are not different from us. It is only a genetic disorder which actually brings about albinism."
Albinism in other African countries
The World Health Organization reports that albinism is found in 1 out of 3,000 Ugandans.
Few people with albinism are killed in the country. But a report by the Ugandan parliament says many are taken by force to Tanzania and parts of Kenya for human sacrifice.
Uganda is not the only country where people with albinism are asking for their rights. Nearby in Malawi, 300 people, most of them with albinism, demonstrated in the past week near the home of the president Peter Mutharika. The demonstrators wanted to meet with him to discuss the killing of people with albinism.
I’m Jill Robbins.
Halima Athumani reported on this story for VOA News. Jill Robbins adapted her report for Learning English. George Grow was the editor.
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Words in This Story
shed – v. to cause to flow
grave – v. a place where human remains are buried
primary – adj. of or related to the teaching of children
qualify – v. to demonstrate one’s skill or ability for a special purpose
exclusion – n. to prevent someone from doing something or being a part of a group
awareness – n. understanding that something is happening
Are people with albinism accepted in your country? What do you think of their efforts to gain their rights in Uganda and Malawi? We want to hear from you. Write to us in the Comments Section.