Sudden Death in the Young Case Registry

Information for Families: Protecting Your Rights During Medical Research

The goal of the Sudden Unexpected Infant Death (SUID) and the Sudden Death in the Young (SDY) Case Registry is to understand and prevent unexpected child deaths by studying information about infants and children who die suddenly.

With consent from their families, the SUID and SDY Case Registry stores DNA samples from infants and children who die suddenly and unexpectedly. These samples can then be sent to researchers for testing in their research studies. The research looks at why infants and children die and may help other families in the future. Families are notified if testing finds information that may put family members at risk for sudden death or for treatable health problems.

Families may have concerns about participating in genetics research. Some concerns may come from hearing about past experiences of harm from medical research. Here are some ways we address these concerns based on past lessons:

Henrietta Lacks

What happened?

In 1951, a Black woman named Henrietta Lacks went to Johns Hopkins Hospital in Baltimore, Maryland. This was one of the only hospitals that treated Black patients during that time. Ms. Lacks was diagnosed with cervical cancer. While she was being treated, some of her cancer cells were sent to a researcher without her consent. They found that her cells grew faster than other people’s. Ms. Lacks was not told her cells might be used for research. Her cells were shared worldwide and even helped develop the polio vaccine. Her cells are still used today for research. Her family has now been compensated for the use of her cells after taking legal action.

What does the SUID and SDY Case Registry do differently?

The SUID and SDY Case Registry want families to agree to what is being done with their child’s DNA. Families are given information about the SUID and SDY Case Registry- what it does, what happens when DNA is saved, and any risks. Families do not need to consent right away or at all. DNA is only sent to researchers for testing if a family agrees.

Tuskegee Experiment                   

What happened?

In 1932, the U.S. Public Health Service began a study to understand syphilis. Syphilis is a sexually transmitted infection that is caused by bacteria. 400 Black men with syphilis were chosen for the study. Participants were offered free medical care but were not told they were part of a syphilis study. Even when a treatment for syphilis was found, researchers did not give it to the participants to help them. Researchers allowed participants to suffer from untreated syphilis. This led to the deaths of some participants.

What does the SUID and SDY Case Registry do differently?

The SUID and SDY Case Registry is honest about what research is done and what it finds. If new information is found about a child during DNA testing, they will contact the family to tell them and give instructions about any important medical actions to take. The SUID and SDY Case Registry works with doctors who can also give families important medical information.

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