WHAT IS A

BIOBANK?

WHAT ARE
SAMPLES?

WHO USES
THE BIOBANK?
 e
NTS. There ar
R O D U C T IO N FOR PARE e ch ild ren
T thes
A T IS A B IO BANK? AN IN ni te d St at es , and millions of m ild as
WH in the U sses can be as
children living (long term) illne
over 70 million C hr on ic are working
by di ff erent illne ss es.
rc he rs across the world
are af fe cted cancer . R es ea and improve
as th m a, or as severe as th at th ey can discover
allerg ie s or illness es , so have a long
id en tif y th e causes of these m ad e in so m e areas, we still
hard to ss has been
le major progre
treatments. Whi ion be-
way to go in ot
her areas.
ss es re su lt from an interact
nic ill ne ve ad-
ve re al iz ed that most chro ye ar s, sc ie nt ific methods ha
Researchers ha last 30 erial
d th e en vi ro nment. In the th e ge ne s (t he inheritable mat
tween genes an ze
easily characteri genes has helped
e po int that we can ). Studying these
va nc ed to th pare nt to ch ild thritis, epilepsy,
its ri sk of disease from e C ro hn’s disease, ar
that tr an sm cond iti on s lik children with
ve lo p be tt er treatments for n re qu ir es sa m ples from many
us de arch ofte
sis. Genetic rese
and cystic fibro be rs. n a patient
eir family mem a Biobank. Whe
an illness and th pe of re se ar ch is
at sample
an t to ol to support this ty m pl e is ob ta ined, part of th
One impo rt tissue sa samples
e a do ct or and a blood or re re se ar ch . With Biobanks,
comes in to se t or fu tu ch has
id e in th e B io bank for curren ro ss th e w or ld. This approa
can be set as ers ac sease,
ct ed an d sh ar ed with research ro ss th e w or ld have a rare di
can be colle ren ac speed
s. So m et im es only a few child di ff er en t ho spitals can help
many benefit een scientists in
d so sh ar in g of samples betw
an samples to
new discoveries. vi du al s w ho donate their
y, and in di rtant infor-
in a bi ob ank is voluntar se nt fo rm s contain impo
Particip at io n rm . C on d families
e as ke d to sign a consent fo ba nk . To help children an
a Biobank ar l to a B io ough the
id er be fo re giving materia w in g ill us trated guide. Thr
mation to co ns
e have develope
d the fo llo is pictorial
io ba nk s, w an d th ei r colleagues, th
understand B rie St at on d for a
io na l te am of Joe and Hila pp en s w he n a family is aske
expert educ at what ha e hope
(a ka co m ic book) illustrates pl e is th en st or ed and used. W
monograph er, and how that
sam tanding
e by a re se ar ch id e, an d ga in a better unders
blood sampl will enjoy this gu future.
pa re nt s an d children alike bu te to cu ri ng diseases in the
th at cont ri
d how they may
of Biobanks an

Editor: Athos Bousvaros Medical Advisors:

Writer: Hilarie Staton Barbara E. Bierer, MD, Professor of Medicine (Pediatrics), Harvard
Artist: Joe Staton Medical School
Design: Victoria Ettlinger Florence Bourgeois, MD, MPH, Associate Professor of Pediatrics,
Design & Production: Harvard Medical School
Jon B. Cooke Athos Bousvaros MD, MPH – Associate Chief of Gastroenterology,
Letterer: Janice Chiang Hepatology and Nutrition, Boston Children’s Hospital
Colorist: Matt Webb Susan Kornetsky, MPH, Senior Director Clinical Research
Compliance, Boston Children’s Hospital

©2021 Boston Children’s Hospital.

 ?

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REMEMBER…
• Research is how we learn about the causes and treatment of illnesses.
• Researchers need both information and biological samples to do
research. These are stored in a Biobank. You may be asked to give either
information or samples or both to a Biobank.
• We collect medical information from hospital records or by asking you
questions.
• The samples we collect may include blood, urine, spit or tissue from
your body. Most times we collect these when you are having medical tests
that require these samples.
• Information and samples in the Biobank may be shared with clinicians and
scientists who do research.
• If you decide not to give anything to the Biobank, you will still get
medical care and it will not affect your care in any way. Participation is
entirely voluntary.
• Make sure you understand what you will need to do for the Biobank. For
example, you might want to know how many times you will be asked to
give information or samples or whether researchers will ever contact you in
the future. Ask any questions you have.
• Your opinion is important. Talk to your parents about the research
before you decide if you want to participate or not.
• You can stop participating in the Biobank at any time. Just let your parents
and the Biobank know.