Transcript Cancer 101, Version 2 - The Cancer 101 Curriculum

Cancer 101: A Cancer Education
and Training Program for
American Indians & Alaska Natives
Version 2 – Updated October 2011
Date
Location
Presented by:
Presenter 1
Presenter 2
Biospecimens & Biobanking
Cancer 101 – Version 2
Learning Module 8
Learning Objectives
At the completion of learning Module 8, you
will be able to:
 Define what a biospecimen is.
 Describe how biospecimens are collected.
 Define what a biobank, or biorepository is.
 Explain how biobanks protect a donor’s
personal and medical information.
 Describe why biospecimens are important
in research.
Learning Objectives (cont’d)




Explain how biospecimens can be used
to advance cancer prevention and
treatment.
Discuss ethical, legal and social
considerations related to tissue
donation for research.
Discuss what informed consent is.
Describe the Genetic Information and
Nondiscrimination Act.
Where can we find clues about
cancer?
Photo credit: Romel Jacinto
What are biospecimens?
FLUIDS
TISSUE
Biospecimen
TYPES:
 Extra tissue from
diagnosis and
treatment
 Donation for
research
 Excess normal
tissue
COLLECTION:
 Blood draw
 Cheek swab
 Urine collection
 Biopsy
 Surgery
Annotation

Personal and medical information
associated with a biospecimen.





Age
Gender
Ethnicity
Disease
Environmental exposures
What is a biorepository?
Photo credits: Katherine Briant | Source: Fred Hutchinson Cancer Research Center
Biospecimen Handling


Specimens are
vulnerable
Stresses
introduced:





Routine handling
during collection
Processing
Storage
Transport
Important to keep
specimens
biologically viable
Biospecimen Storage
Photo credit: Katherine Briant | Source: Fred Hutchinson Cancer Research Center
How is a donor’s privacy protected?


Tissue is coded
with a unique
identifier.
Categories of
biospecimens:



Photo credit: Katherine Briant
Source: Fred Hutchinson Cancer Research Center

Identified
Identifiable
Anonymized
Anonymous
Why are biospecimens important?



Contain lots of
information
Can be processed
and stored for
later research
Can be used to
develop new
diagnostic tests or
treatment drugs
Photo credit: Linda Bartlett | Source: NCI
Biospecimens for Cancer Research
Photo credit: Diane A. Reid | Source: NCI
Advancing Cancer Prevention and
Treatment
Research on biospecimens can…
 Answer questions:




Why does cancer develop?
How does cancer grow?
Who is at greater risk of developing it?
Develop targeted treatments:


Herceptin® (trastuzumab)
Gleevec® (imatinib)
Personalized Medicine
SOURCE: National Cancer Institute
Personalized Medicine

Goals:



Identify genetic differences between
people that affect drug response
Develop genetic tests that predict an
individual’s response to a drug
Tailor medical treatments to the
individual
Increase effectiveness
 Minimize adverse side effects

Image Source: National Human Genome Research Institute
After Research Is Completed


Photo credit: Rhoda Baer | Source: NCI
Research results may
not be ready for
many years.
Donors receive
results of own
medical tests, but
usually not results of
research performed
with leftover tissue.
Past Research Without Consent
SOURCE: Smithsonian.com
SOURCE: The New York Times
Bioethics & Biospecimens


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How do you help people make
informed choices about biospecimen
donation?
Who owns information discovered as
a result of research on the
specimen?
How will discoveries be used?
Do research findings affect an
individual or minority community? If
so, how does that affect society’s
perception of that individual or
community?
Belmont Report


Issued in 1979
by a national
commission
Sets forth three
principles for the
ethical conduct
of research:
1.
2.
3.
Respect for
persons
Beneficence
Justice
What is Informed Consent?



A document
A process
Should:



Photo credit: Rhoda Baer | Source: NCI
Provide adequate
information
Ensure participant
understands
information
Include voluntary
consent
Informed Consent for Biospecimens
Informed Consent should cover:
1. Collection of the biospecimen(s)
for the intervention.
2. Anticipated use(s) after the
intervention.
3. Findings from the research on the
biospecimen(s)
Benefits & Risks of Donating
Biospecimens
Benefits:
 Help determine
prognosis and
treatment
 Advance
knowledge on how
to fight diseases
 Helps others in the
future with
medical advances
Risks:
 Physical





Pain
Bruising
Swelling
Infection
Non-physical


Loss of privacy
Breach of
confidentiality
GINA


The Genetic Information
Nondiscrimination Act of 2008 (aka
GINA)
Prohibits discrimination in health
coverage and employment based on
genetic information.
Deciding to donate biospecimens



Entirely voluntary
Talk with your
provider, family and
friends.
Review resources to
become informed.
Case Study


When Martha met with her surgeon to
discuss her breast surgery, he
informed her about a study going on
at the cancer center that was
collecting blood samples from
patients with and without breast
cancer.
He explained the purpose of the
study, the risks, and benefits and
offered her a pamphlet with more
information.
In Summary

You now have an understanding of:




what a biospecimen is and how they
are collected.
what a biobank, or biorepository is.
how biobanks protect a donor’s
personal and medical information.
why biospecimens are important in
research.
Summary (cont’d)




how biospecimens can be used to
advance cancer prevention and
treatment.
ethical, legal and social considerations
related to tissue donation for research.
what informed consent is.
the Genetic Information and
Nondiscrimination Act of 2008.