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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

VIEWPOINT: Science's Helping Hand

DNA testing in Brazil is reuniting people separated by a diagnosis of leprosy.

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MORHAN meeting on the separation issue in 2011

DNA testing involves analyzing the sequence of a person's genetic material. It can be used to test if people are related because DNA is inherited from one's parents and shared among members of the same family.

During the period of compulsory internment of people diagnosed with leprosy in Brazil, many families were split up. Sometimes parents were interned and their children were given up for informal adoption. In other instances, babies born inside hospital colonies were handed over just after birth to be raised by other family members - or given to complete strangers. As a result, there are many people today who don't know their parents or siblings, or have no formal proof of their relationship.

MORHAN, the Movement for the Reintegration of People Affected by Hansen's Disease, had the idea of searching for people who had been separated from their kin. In Argentina, DNA testing was being used to identify children taken from their mothers during that country's so-called "dirty war." But the idea of doing the same for people affected by leprosy in Brazil was not immediately practicable.

GOVERNMENT GRANT

In 2011, my institute was given a research grant for medical population genetics by the Brazilian National Research Council. We decided to use it to conduct DNA testing of people affected by leprosy as a way to demonstrate genetics to the public. We called the project "Reencontro," which means reunion.

The test subject gives a saliva sample, which is sealed in a container. We are present when the sample is given to verify its authenticity, and return at a later date to give the results in person. In some cases, the people we test don't know who their parents or siblings are; in others, they already know, but they have a false identity because they were registered under a different name to shield them from discrimination.

The testing is important for two reasons: first, because people have a right to their own identity; and second, because MORHAN is trying to get compensation for these individuals. Since our laboratory is recognized by the Brazilian government, we are able to issue an official document to all those we test.

Each test costs around US$300. This does not include the salary of those involved, as we are doing this work on a voluntary basis, or the travel costs, which we share with MORHAN. If you went to a private lab for a paternity test in Brazil, it would cost more than US$1,000.

To date, we have conducted tests in around 12 states and had 200 positive matches. We have funds to test up to 1,000 people. MORHAN estimates that more than 10,000 people were separated from their family members, although it is unclear how many of them would need a DNA test to prove their identity.

Local media have been actively covering the tests, which have been well received. Many people did not know about this issue. Even though I had been aware of compulsory isolation, I had not known about children being taken from their mothers' arms.

"As I was giving the son the results - a positive match - he began to cry."

Being able to give people a document showing they have a parent or a child, or a sibling, has been very rewarding. For me, the most emotional time was when we traveled to Acre state to give the result of tests done on a possible father and son. As I was giving the son the results - a positive match - he began crying. It turned out his father had since died; but he was relieved that he would be able to pay his respects at his father's grave. It was all I could do not to start crying myself.

Lay people tend to have a rather negative view of genetics, based on what they have seen in science-fiction films. But with this project we are able to show that science also does good things, especially when you consider that the people we are testing are those who were separated from their families on the basis of scientific assumptions at the time. We can't repair all the damage that was done, but at least we are giving something back - and as a scientist that gives me real satisfaction.

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AUTHOR: Lavinia Schuler-Faccini

Dr. Lavinia Schuler-Faccini is a geneticist with Brazil's National Institute of Population Medical Genetics (INAGEMP) and president of the Brazilian Medical Genetics Society.