Autistic researchers and advocates oppose the creation of autism database -in major studies, they pointed out the health of autistic people and pointed out how to misuse such databases.
The Ministry of Health and Welfare (HHS) refused to be a registry, but the institution confirmed that a wide database for autism on autism would conduct $ 50 million in autism. Robert F Kennedy JR, Minister of Health, said he plans to publish a study in a few months last week.
no way petition In response to the registry, thousands of signatures were obtained a day and nearly 35,000 signatures in 2,500 within 24 hours.
“I’m a quiet person who likes to be in the background,” said Ryan Smith, the first petition producer of two nerve debut children who lived in Aida Ho.
“But I really have to feel really strong, really strong, and speak for children who can’t say themselves.”
The petition collected almost 50,000 names before declaring victory when HHS looked like a look back on the plan.
“We are not creating autism registry,” said HHS spokesman.
But the difference seems to be in the name. The agency confirmed that it is creating a “real data platform for connecting existing data sets” for research on causes and treatment of autism.
Autistic psychologist Amy Marschall said, “They say they are not autistic registry, but they sound like they are renamed. I have been against it for a long time Registration of mandatory autism.
The health agency did not respond to the Guardian’s questions about whether an individual could escape the database, or how to take the security and personal information protection measures, or whether a similar database would collect information on other conditions.
Causes of autism spectrum disorders, in general, in general, the causes of various nerves and developmental conditions that focus on how people interact, communicate, learn, and act in general have been identified as genes in most cases.
Nevertheless, Kennedy announced last week that a new study began.
Kennedy said, “It will be part of the first answer by September, and within six months we will get a decisive answer.
Smith is worried that databases and research can worsen the stigma of autism and prevent individuals and families from diagnosing and treating.
Smith said, “In the worst case, we are worried that we are on a slippery slope on genetics.” “My heart immediately goes to history and work in Nazi, Germany. It feels extreme but possibilities.” He pointed out that people with disabilities achieved their first goals at that time.
Opponents are also curious about personal information and security measures that health institutions have not explained in detail and how to use personal information.
“Would you like to take this as an excuse to take my rights, to keep your child on my will, and to take away the right to manage my finances?” Marschaall asked.
Diana Schendel, a professor at DREXEL University’s AJ DREXEL AUTISL AUTISL AUTISL AUTISM Institute, is generally “human research protection is to protect such damage and protect people’s interests.
Another research project does not create a registration agency for participants, but Schendel says the main stage to protect people before the project begins.
In general, the Research Regis Tree invites participants and provides prior consent on how to perform research and how to use information.
Schendel said, “You can also create a database using existing data, but you can’t ask for permission later after collecting information.”
National projects can endanger important research on autism, Schendel said:
The aggressive timeline for Kennedy’s outcome is also “timely”, Schendel said.
Schendel said, “The idea that you can get a variety of data sets and collect it as a single data set and perform analysis with all meaningful answers in a very short time.
To collect data, the National Institute of Health is looking for partnerships with other federal agencies, including Medicare and Medicaid Service Center, US Disease Control and Prevention Center, Defense Ministry, and Veterans Secretariat.
NIH coach Jay bhattacharya proposal Collect data from wearable devices such as pharmacy chains, health care and medical expenses and smart watches to perform “real -time health monitoring”.
The proposal to use Bhattacharya’s personal data set is also likely to face personal information protection. This is because the company has collected the information for other purposes and does not have the authority to share it or use it for research.
Schendel said, “I think that the company will be very concerned because it is responsible for the privacy of the information.
seven main Dellaware, Indiana, North Dakota, New Jersey, Rod Island, Utah and West Virginia -Compulsory Autism Register. The city and local police stations sometimes maintain the registration agencies of the disabled.
There is a difference in how to collect stock information. For example, in North Dakota, clinic should submit an autism diagnosis. Utah has similar requirements, but thank you for the hospital record, Marschall said.
She hopes to stop the project on the track that interest in the federal database will stop the project on the track, and the weekly registry will be investigated closely.
“Why do I need my confidential information that I did not agree to give you?” Marschaall asked.
“Nobody says. ‘Do not study us.’ Nobody says, ‘Do not find a way to make our lives better.’ It is, ‘Do not study us in your research team, but not to eradicate us, but find ways to support us.’
New Hampshire is also the main representative Eric Gallager lawIt abolishes the registry and destroys the record by supporting parties.
Gallager said about the registry of NEW HAMPSHIRE, “I was concerned about the potential information that I could identify personally.” In all states where the registry is, you need to make sure there is a potential personal information problem. “
Those who change this law can help the Democratic Party, Republican and Independent members of the National Assembly, which can help to cross the party line, he said.
Smith’s petition is spoke in all aspects of politics.
“This doesn’t necessarily have to be political,” he pointed out. “It is human. And many people are influenced.”
