The Down Syndrome Research Foundation says it has helped hundreds of families in the US who have been denied adoption after their children’s genes were identified as having Down Syndrome.
It says more than 3,000 people have been identified through its website and social media, and that it has also helped more than 300 people who were denied adoption.
The foundation says it is also helping parents with the process of determining if their children have Down syndrome.
“There are so many different families across the country that are trying to figure out what to do, what to look for,” said Debbie Johnson, a program officer for the foundation.
“We are here to support them in that.”
Johnson says the foundation has helped more people than ever before.
“The outpouring of love and support from the community has really been remarkable,” she said.
“People are sharing stories of their own families who were impacted by the gene test.”
It’s just so rewarding to see so many people come together to support one another and offer their love, their help, their support.
“The foundation’s founder, Dr. David Rosenbaum, says the gene testing has helped thousands of people.”
When we started this work in 1998, we were just looking for the next big thing, to find something that would make a difference in people’s lives,” he said.
The gene test has also been used in several countries.
The U.S. is one of only two countries in the world that does not require gene testing for adoption, with many countries requiring parents to undergo the test before they can adopt a child.
It’s also used in Japan, Canada and the UK.
The most recent study that looked at the impact of gene testing on adoption outcomes found that the tests reduced the number of children with Down syndrome and improved their mental health.
Johnson says that even if the tests are proven to be effective in finding a match for a child with Down’s, the charity still needs to do more research. “
These tests can be misleading because the genetic markers we have, which are known to be very accurate, can be misused by those who do not have Down’s syndrome,” Johnson said.
Johnson says that even if the tests are proven to be effective in finding a match for a child with Down’s, the charity still needs to do more research.
“They do not tell us what the genes are and that’s the most important thing, which is that the person is being treated as an individual,” she added.
“I would hope that they are helping in that way.”
The nonprofit also says it works with the National Center for Down Syndrome and Developmental Disabilities (NCD-DID) to ensure that people with Down Syndrome are given equal access to the gene-testing system.
“When we have a child who has a family member with Downs, the NCD-HID is not involved in the gene or test process,” Johnson told ABC News.
“It’s a community effort and the best way to provide that is to be part of the community.”
ABC News’ Michael Siegel contributed to this report.