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After Newborn Screening

Your Baby's
Blood Spots

choose one of the following options:

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What are leftover blood spots?

Soon after birth a few drops of blood are taken from your baby's heel.

These "blood spots" are used for newborn screening.

Usually portions of the blood spots are left on the newborn screening card after testing is finished.

The information in this app is designed to help you make a decision about allowing the research use of your baby's leftover newborn screening blood spots.

How are blood spots used?

Leftover blood spots from newborn screening programs across the country are used in research to improve public health in many ways.

While this research may benefit the health of communities, you or your baby may not benefit directly. The more parents who choose to participate, the greater the benefit for everyone.

How are blood spots used?

Blood spots can only be used for studies to better understand disease and improve public health.

Many types of laboratory methods may be used to study biological factors like DNA or environmental factors like metals and toxins.

Leftover blood spots may also be used by the state lab to ensure that newborn screening detects those at risk.

Is extra blood drawn for research?

No extra blood is drawn from the baby for the BioTrust.

What are the risks?

The risk for using blood spots in research is that your baby could be identified. This risk is very low. Many steps are taken to protect privacy.

Details that could identify your baby or family are removed before blood spots are given to a researcher.

More Info
What is Newborn Screening?

Newborn screening is a state program that screens all babies at 24-36 hours of age for over 50 serious disorders.

A few drops of blood are taken from your baby's heel. These blood spots are sent to the State Laboratory for testing.

Will you or your child get
blood spots research results?

In most states, personal research results are not provided because researchers are not given data that can identify you or your child.

Why is it helpful to have representation
from all groups of people in research?

This kind of research benefits the whole population. If the blood spots represent all children — rich and poor, all ethnicities, all regions across the state — research will reflect the whole population.

How are blood spots used to
improve newborn screening?

Many of the current newborn screening tests were developed thanks to research using leftover blood spots.

When researchers want to determine if a disease can be detected in blood spots, they run the new test with thousands of stored spots.

Blood spots are also used for quality control to test lab equipment.

How is DNA used?

Blood spots contain many cell products, like DNA and proteins, that can be analyzed in research.

Researchers look at DNA to understand the genetic factors in many conditions such as cancer, birth defects and cerebral palsy.

Why won't I benefit directly?

Blood spots are used without personal identifiers. This means that, in most states, results cannot be returned because researchers dont know the identity of the blood spot.

You will not be paid if your childs blood spots are used or products (such as new drugs) ever come from the research. Your family or community may benefit in the future from research looking at new ways to diagnose, prevent or treat disease.

How has public health been
improved from this research?

Examples include:

  • Developing new screening tests for babies.
  • Looking for better ways to diagnose leukemia.
  • Studying mercury levels in leftover blood spots to improve education about eating fish during pregnancy.
Are blood spots used for
cloning or stem cell research?

No. Blood spots cannot be used for cloning.

Stem cells are specialized cells that cannot be isolated from blood spots.

Why are there usually leftover
blood spots after newborn screening?

Newborn screening requires collecting enough blood to ensure all tests can be completed, including possible follow-up tests.

Most of the time, all of the blood spots arent needed to complete the testing process.

What are the safeguards?
  • Only authorized people can access the stored blood spots.
  • To use the blood spots, researchers must have permission from at least two review committees made up of doctors, scientists, and community members. The committees only allow blood spots to be used in studies that are scientifically valuable and ethical.