+ All Categories
Home > Documents > Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours...

Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours...

Date post: 28-Dec-2015
Category:
Upload: jessie-booker
View: 218 times
Download: 1 times
Share this document with a friend
94
Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version + ARS Linda Burhansstipanov, MSPH, DrPH Native American Cancer Initiatives, Incorporated (NACI) 3022 South Nova Road Pine, CO 80470-7830 http://www.NatAmCancerInitiatives.org Lynne Bemis, PhD, Head of Biomedical Sciences Department
Transcript
Page 1: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101Module 8: Biospecimens and

Biobanking(Community version)

estimated time: 2 hours with Participant interactivity02-01-2013 version + ARS

Linda Burhansstipanov, MSPH, DrPHNative American Cancer Initiatives, Incorporated (NACI)

3022 South Nova Road Pine, CO 80470-7830

http://www.NatAmCancerInitiatives.org

Lynne Bemis, PhD, Head of Biomedical Sciences DepartmentUniversity of Minnesota School of Medicine, Duluth Campus

Page 2: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

AssumptionsThis is a workshop that should follow several other topics (e.g., overview of cancer among AI/ANs, importance of cancer screening, etc.).

Thus, it is not an introductory topic.

This includes scientific and cultural information specific to biobanks and biospecimens.

The workshop facilitator / faculty is/are NOT interested to collecting biospecimens from you.

Page 3: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Please turn off your cell phones or switch them

to “vibrate” mode

Page 4: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Audience Response System (the Keypads)

(TP)

Page 5: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

5Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

Turning Point Keypads

Lanyard that goes around

your neck

These are NOT

calculators and need to

be returned to the faculty at the end of the

session please

Page 6: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

6Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

Audience Response System (ARS) – keypads

This is how we vote on different items and issuesAlthough the keypads are “anonymous” (we don’t know who uses which keypad); but we would like you to use the same one throughout the workshop You do not need to “point” the keypad (like a TV remote control)You will see a counter on the screen that shows how many people have “voted” on any itemYou press the number on the keypad that best describes your answer (use “0” for “10” on the keypad)

Page 7: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

7Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

Audience Response System (ARS) – keypads

You can change your vote up until the final vote has been collected and the slide advances

A top bar appears and the upper right-hand box needs to be “green” before you vote.

A summary of bar graphs appears on the screen after the votes are completed for most items so that everyone can see the total tallies

The summary bar graph will not appear for pre-workshop knowledge items or workshop satisfaction

Page 8: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

5 Demographic items(TP)

Page 9: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

What is your gender?

1 2 3

33%

0%

67%1. Male2. Female3. Don’t want to answer

Page 10: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

brthyr5

About How Old are You?

1 2 3 4 5 6 7 8 9

0% 0% 0%

67%

0%0%0%0%

33%

1. 81 and older2. 65-803. 50-644. 41-495. 31-406. 21-307. 13-208. Under 129. Don’t want to answer

Page 11: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

What is Your Primary Race?

1 2 3 4 5 6 7

14% 14% 14% 14%14%14%14%

1. American Indian / Alaska Native (AIAN)2. Pacific Islander3. Asian4. African-American5. Non-Hispanic white (Caucasian)6. Other7. Don’t know / Don’t want to answer

Page 12: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Are you Hispanic, Latino or Chicano?

1 2 3 4

25% 25%25%25%1. Yes

2. No

3. Don’t Know / Not sure

4. Don’t want to answer

Page 13: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How Much Schooling have You Completed?

1 2 3 4 5 6 7 8 9 10

0% 0% 0% 0% 0%0%0%

33%

67%

0%

1. Elementary (kindergarten through grade 6 / grade school)

2. 7th , 8th , or 9th grade (middle school)3. 10, 11, or 12th grade (no degree)4. High school graduate / GED5. Technical school /apprentice training6. Some college (no degree)7. College AA degree8. College BA, BS degree9. Masters’ degree10. Doctorate or more

Page 14: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Personal Experience

Questions (TP)2 items

Page 15: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How much science education have you completed?

1 2 3 4 5

0%

67%

0%

33%

0%

1. None2. Between 1-6 hours3. Between 7-14 hours4. 15+ hours 5. Don’t know / Don’t want

to answer`

Page 16: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Have You ever been Told by a Healthcare Provider that you have Cancer?

1 2 3 4

100%

0%0%0%

1. No2. Yes3. Don’t know4. Don’t want to answer

Page 17: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

17Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

Pre-Workshop Knowledge 2 Items

You won’t see the answers

(until the end of the workshop)

Page 18: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Which is TRUE about Biobanks and Biospecimens?

1 2 3 4 5

20% 20% 20%20%20%

1. All Biospecimens have DNA

2. Almost all biobanks are managed by federal agencies

3. Biospecimens can be used to diagnose a health condition

4. Urine is an excellent source for DNA

5. Don’t Know / Not sure

Page 19: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

For which issue do most American Indian and Alaska Native tribal / village communities object?

1 2 3 4 5

0% 0% 0%

33%

67%1. AI/AN specimens used for a single

study with informed consent

2. A biospecimen DNA research study on obesity genetic markers

3. Tribal / Village ownership and control of data and biospecimens

4. AI/AN biospecimens used to create patents (e.g. medications)

5. Don’t Know / Not sure

Page 20: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Why am I here today?

Research can only be done on the samples that are available in biobanks.

Historically, most biobanks contain samples from white men.

This means that research conducted will be more likely to benefit those people.

The lack of samples from people of other race/ethnicity means that long-standing disparities in research may continue.

20

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org

Page 21: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

About this Workshop:What is Cancer 101?

It’s an education program that covers different topics about cancer.

It’s designed with input from our community.

It’s for you or any loved one – please share it with others.

3 of the Cancer 101 modules are modified for cultural relevance to American Indians.

21

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org

Page 22: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Cancer 100 “Overview of Cancer” (Burhansstipanov)Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 22

QUESTION: What is cancer?

A group of over 100 diseases in which abnormal cells

Divide without control or Don’t die when they should (Apoptosis)

Cancer:

Is primarily a disease of older people

Occasionally occurs in young people

But, the majority of cancers appear in people who are older (over 45)

Page 23: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101 Module 8 Biospecimens and Biobanking Objectives. By the end of this

session the participant will be able to:

1. Describe biospecimens and biobanking.2. Discuss ethical, legal, social, spiritual

and cultural considerations and policies related to tissue donation for research.

3. Identify potential benefits and drawbacks of taking part in biobanking (individual, AIAN community, researchers).

4. Explain informed decision-making.

Page 24: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 24

QUESTION: Why is this topic important for AIANs?

Science is rapidly changing and AIANs may want to take part (inclusiveness)

As part of research advancing, do AIANs want to contribute to the body of knowledge?

Genetic specimens in biobanks and repositories may contribute to medicines (targeted therapies) tailored to the individual or the community

Page 25: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Objective 1:

Describe biospecimens

and biobanking.

Page 26: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 26

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 26

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 26

Cancer Care Research

Every day science makes new progress to:

Find cancer sooner

Find better treatments

Help people live better with cancer

Help people live longer after cancer

Lance Whitehair, MDNavajo Nation

Lab Discoveries with Dr. Lynne Bemis, Cancer Research

Page 27: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How you can help:Learning more about cancer

Researchers may ask both cancer patients and non-cancer patients to help by:

Donating a sample (called “biospecimens)

Joining a research study (clinical trial)

27

Wilma MankillerFormer Principal Chief,

Cherokee Nation of Oklahoma; Nov 1945 – April 2010

participant in clinical trials for 2 types of cancer;

“Native people need to take charge of your own health care.” Mankiller,

2005

Page 28: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 28

QUESTION: What are biospecimens?

Materials taken from the human body.

Contain information, about the human being and also about their disease

Ph

oto

cre

dit:

Ro

me

l Ja

cin

to

Primarily DNA, RNA and ProteinsBut not all biospecimens contain DNA

Page 29: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 29

QUESTION: What are common sources of biospecimens?

BloodSalivaHair rootFingernailsFlaked off skin cells (e.g., from clothing)Biopsy tissueBronchoscopySpermSurgical Procedure

Page 30: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 30

How do researchers get samples?

Cheek swab (as seen on TV)

QUESTION: What are other ways to collect specimens?

Blood drawUrine collectionHair pull (need follicle)BiopsySurgery

Page 31: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Why are samples important?

They have a lot of information and clues

They can be used to come up with new tests or treatments

They can help find disease or measure how a treatment works

They can be stored for later research

31

Page 32: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

3232

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 32

Uses of Biospecimens

Biospecimens can be used:

To diagnose a condition

To treat a person’s disease

For research

To educate medical students and providers

In forensics

Page 33: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How are samples used in research?

They are used to:Find ways to send drugs to certain cellsSee how diseases are different and change over timeGroup patients to find out

33

which treatment might work bestMake tests to find cells linked to certain stages or types of a disease

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org

Page 34: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

What questions can samples help answer?

Research on samples can answer questions:Why does someone get cancer?How does cancer grow?Who has a higher chance of getting cancer?What treatments work best?

It can also help find treatments that attack certain cancer cells (targeted treatments)

34Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of

EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org

Page 35: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 35

Where are samples stored?Samples are kept safe in a biobank (also called “Repositories”)

The US has thousands of biorepositories

Vary in size, type of biospecimens collected, uses and purposes

Can be owned and run by Government agenciesState governmentsPublic health departments Individual investigators

Private companiesUniversitiesResearch Institutes

Page 36: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 36

Biobank for a Single Study

May be limited to a specific type of:

Condition:

Cancer

Diabetes

Heart disease

Specimen (blood, tumor tissues)

Informed consent process is limited to studies about the specified condition only

Page 37: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 37

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 37

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 37

After Research Is Completed

Research results may not be ready for many years.

Donors don’t get to decide what type of research for which their specimen is used

Donors receive results of own medical tests, but usually not results of research performed with leftover tissue.

Photo credit: Rhoda Baer | Source: NCI

Page 38: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 38

What questions can samples help answer?

Research on biospecimens can answer questions:

Why does someone get cancer?

How does cancer grow?

Who has a higher chance of getting cancer?

What treatments work best?

It can also help find treatments that attack certain cancer cells (targeted treatments)

Page 39: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 39

How can research on samples benefit YOU?Personalized medicine:

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 effectivenessMinimize adverse side effects

Page 40: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Example of Personalized Medicine

QUESTION: How many people die each year in the U.S. from medication side effects?

100,000

QUESTION: How many people suffer from serious side effects from medications in the U.S. each year?

2,000,000 (2 million)

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 40

Page 41: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 41

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 41

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 41

QUESTION: What factors can influence how a person responds to medication?

WeightDietFood in stomachFatigueAgeSun exposurePhysical condition / lack of exerciseDrug interactions (i.e., Cross reactivity, synergism)Genetic make-up

Obviously, many factors affect people’s

responses to drugs other than genes.

Page 42: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 42

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 42

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 42

The Enzyme “Cytochrome P-450” contributes to ~ ½ of all medications

Examples of medicines ...

Codeine (opiate to treat pain or relieve cough by converting to morphine in the body)

Acetaminophen

Diazepam (dye az' e pam)

Cyclosporin A

Erythromycin

Page 43: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Balance of 3A4 and 2D6 within P-450

You always have 3A4.

But, if 3A4 is too high in comparison to the amount of 2D6, the liver cannot metabolize codeine into morphine

Instead = “norcodeine” which cannot be used by the body

Grapefruit juice can reduce your 3A4

Quinidine (used for heart arrhythmia or malaria) reduces 2D6.

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 43

Page 44: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

3A4 2D6

Grapefruit Juice Quinidine

Page 45: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Group A Group B

Group C

Grapefruit Juice

Quinidine

Will be distributed by workshop faculty shortly

Page 46: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Interactive Activity

Please form groups of 4 people each

Each group represents one human liver

Each group (liver) receives a sack of candies

Look at the balance of 3A4 (Hershey’s kisses) and 2D6 (peanut butter cups).

Page 47: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Interactive Activity Can the liver convert codeine into morphine?

Eat or remove a few candiesNow can the liver convert codeine into morphine?

Addition of grapefruit juice or quinidine; how does that affect your metabolism?

2D6

SUMMARYMore 2D6 than 3A4 = can convert codeine into morphineMore 3A4 than 2D6 = cannot convert codeine (makes norcodeine)Grapefruit Juice = reduces 3A4Quinidine = reduces 2D6

3A4

Grapefruit Juice

Quinidine

Page 48: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Read Rx labels

Many say, “do not drink grapefruit juice”

QUESTION: Why? What does too much grapefruit juice do to the 2D6, 3A4 balance?

Reduces 3A4 and changes the effectiveness of the medication

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 48

Page 49: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Pharmacogenetics Study in Indian Country

University of Montana

Working in partnership with ~5 tribal nations

Examining the P-450 enzyme to learn if American Indians metabolize medications differently than Whites or other racial groups

~1/2 of Southwestern American Indians have variation in 3A5 (same family as 3A4)

How do MT Tribal Nations differ?“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap Version

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 49

Page 50: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Genetic Information Nondiscrimination Act of 2008This law does not let health plans deny insurance to a person because they may have a greater chance of getting a disease.

The Belmont Report

A report issued in 1979. It outlines 3 basic principles of the ethical treatment of persons joining research studies.

1.Respect2.Protect3.Be fair

How are your rights protected?Institutional Review Board (IRB)•A group of scientists and community members

•Reviews studies to make sure the people taking part will be safe and protected.

1960 1970 1980 1990 2000 2010 2015

50

Page 51: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

It is a process where you learn the facts and ask questions about a study like:

What is being researchedWhat will happen during the researchLength of time of the studyRisk and benefits

Your rights:Taking part is your choiceYou can leave the study at any time

What is Informed Consent?

51

Page 52: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How do I donate to a study?

Confirm your tribal nations ordinances (if any) related to sharing samples for research studies

Ask your doctor or nurse what samples you may be able to donate.

Confirm the type of sample does not violate tribal cultural beliefs (hair, skin, blood)

There are two ways you can donate:“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap Version

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 52

Page 53: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

How do I donate to a study?

Donate samples

Collected during a medical procedure.

Often, parts of your samples are left after your doctor uses what he or she needs for tests.

Confirm you tribe has no issues with how the residue sample is handled.

Through a procedure not related to your care, like a blood draw or saliva swab.

“Native Cancer 101 Module 8: Biospecimens and Biobanks” Gmap VersionNative American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES

Community Network Programs 2” [P.I. Kaur; U54CA153605] http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 53

Page 54: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 54

Kerri Lopez, NPAIHBTolowa Tribe of

Northern California

I would participate in biobanking, if asked

December 2011

Tribal Nations vary in their opinions about taking part in biospecimen /

biobanking research

Page 55: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

For More Information

Talk to your doctor or nurse

Contact Mayo Clinic Spirit of Eagles, http://www.NativeAmericanPrograms.org

Contact the Office of Biorepositories and Biospecimen Research

E-mail: [email protected]

Web: http://biospecimens.cancer.gov

55

Page 56: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Objective 2:

Discuss ethical, legal, social, spiritual and

cultural considerations and policies related to

tissue donation for research.

Page 57: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 57

Havasupai Study & Case (1989 – 2010)

In 2010, the Havasupai Tribal Nation settled a class action lawsuit against Arizona State University and the University of Arizona

Misuse of blood samples and DNA originally collected for research on diabetes

Page 58: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 58

Havasupai Study & Case (1989 – 2010)

These research specimens were later used for multiple other purposes including research on “schizophrenia, inbreeding and population migration.”

Insufficient informed consent process

Part of the Havasupai conflict was that the tribe thought their specimens were being used for a single study and the researchers thought the specimens were for biobanking

Page 59: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 59

Havasupai (continued)Researchers need to be careful about violations of research ethics for individual studies versus biospecimen storage that allows many researchers to access the specimen for studies without subsequent tribal or individual donor approvals

$700,000 fine paid by Arizona State University and tribal sanctions prohibiting research studies with ASU

What happened to the PI? New job, promoted

Page 60: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 60

Based on Tribal Discussion Groups conducted through “Genetic Education

for Native Americans” (GENA®)

According to GENA® participants (>3,000 AIANs), most tribes and urban Indian programs ARE interested in taking part in research that addresses:

Diabetes

Obesity

Cancer

Heart conditions

Page 61: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 61

Based on Tribal Discussion Groups conducted through “Genetic Education for

Native Americans” (GENA®) (1999-2004; PI: Burhansstipanov, HG01866]:

Tribal Nations differ greatly on their perspectives about:

The storage of biospecimens

Inclusion within repositories that do not require individual informed consent processes

Page 62: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 62

Issues Identified through GENA®

Ownership of the specimens / dataMost tribes / urban programs want to own study data

Access it for additional programs/services

QUESTION: Who owns the data and the study results?QUESTION: What is your tribe’s opinion about owning data or specimens?

Page 63: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 63

Issues Identified through GENA®

Storage of data or specimensQUESTION: Who or what organization would your tribe be likely to trust to store tribal data or specimens?Storage of specimens requires a minus 80 degree freezer with back-up generators … ~$100,000 for the freezer

Page 64: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 64

Issues Identified through GENA®

Cultural perspectives about specimens Such hair, hair roots/ follicles or blood for certain tribes is prohibitedBlood tests for prenatal health is usually acceptableQUESTION: Are any tissues protected by your tribal beliefs?

Page 65: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 65

Issues Identified through GENA®

Uses of specimens For research on a single disease (e.g., dedicated use of specimens only for cancer, heart disease, HIV)Specimens should not be used to create patents for drugs or devices

Some tribes have brokered agreements to have access to new patented drugs and devices

Page 66: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 66

Issues Identified through GENA®

Research on topics of little to no interest to the tribal nation

Mitochondria DNA to trace roots to Africa of little to no interest to AI/ANs

Genetic / specimen research on diabetes, substance abuse, mental conditions such as depression = high interest by many tribal Nations

Page 67: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 67

Issues Identified through GENA®

Publication of genetic research findings without obtaining previous tribal approvals

Most tribal groups have policies requiring review of findings prior to submission as abstract for conferences, publication

Tribal sanctions: scientific inadequacy to appropriately protect cultural mores, privacy and confidentiality

Page 68: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Participant Interactive Activity

NOTE: Facilitator can make this case study into a handout

(or retain the slides if not feasible to make a handout)

Page 69: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 69

Case Studies Interactive Activity Please form groups of ~5 individualsPlease select a recorder for your group. This individual will take notes and report summary comments back to the entire group.The Case of Strong Arm and background information about his situation followed by a series of questions.Please answer each question and come to consensus within your group.

Page 70: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 70

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 70

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 70

Case Study Real Story: Strong Arm

When entering the lab where the students were doing their summer fellowship, an obnoxious worker from the next door lab kept hounding them to give him a blood specimen.Strong Arm said, “no” multiple times.After a few weeks of refusals, the obnoxious worker said, “we just want to get practice taking blood specimens so that my girlfriend can pass a test to be a phlebotomist.”

Page 71: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 71

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 71

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 71

Real Story: Strong Arm

Strong Arm finally relented and said, “you can take my blood, but you cannot use it for anything else and you cannot store it.” The girlfriend who collected the blood specimen agreed it would not be used for anything

She was supposed to dispose of the residue

Page 72: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 72

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 72

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 72

Real Story: Strong Arm

2 years later, the girlfriend turned the blood over to the obnoxious worker (her boyfriend) because his father promised the girlfriend a medical fellowship3 years later (2011), another student comes up to Strong Arm and says, “I’m testing your DNA for a specific type of cancer”

Page 73: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 73

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 73

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 73

Real Story: Strong Arm

The specimen was linked with the student’s name and was in a personal (an illegal /not approved by IRB) biobankNo informed consent process ever conductedStudent struggled with this all weekend, very upset His tribe has an ordinance about sharing specimens

Page 74: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 74

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 74

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 74

Real Story: Strong Arm

His immediate supervisor reported the condition to the University Ombudsman and to her immediate supervisor

She subsequently left the universityQUESTION: What are other strategies the student needs to do to address this situation?

Page 75: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Objective 3:

Identify potential benefits and

drawbacks of taking part in biobanking (individual, AIAN

community, researchers).

Page 76: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 76

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 76

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 76

Benefits & Drawbacks for an Individual Donating Biospecimens for Research

Benefits:

Helps determine diagnosis, disease stage, prognosis and treatment for other future patients

Helps get information to cure or manage the disease

Drawbacks:No individual benefitsPhysical

PainBruisingSwellingInfectionA risk in poorly conducted research may be

Loss of privacy Breach of confidentiality

Page 77: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 77

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 77

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 77

Benefits & Drawbacks for a Tribal Nation for Donating Biospecimens

Benefits:Tailoring (individualizing) treatments based on knowledge learned (childhood leukemia Clinical Trials standard or tailored care)CYP450 and pain management (50% of SW tribes have variability in 3A5 within CYP 450 family)

Drawbacks:Discrimination against tribal membersLack of access to quality care even though contributed to creating the body of knowledge

Page 78: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 78

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 78

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 78

Benefits & Drawbacks for a Researcher for Collecting Biospecimens

Benefits:Once the specimen is collected, if in a repository can use for multiple studies without requiring subsequent informed consent from participantSaves limited research monies

Drawbacks:Anecdotal information (phenotype) may not be linked to the biospecimenUnable to provide individual results back to participant (biospecimens are supposed to be anonymous

Page 79: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Interactive Activity

GENA® Jeopardy

Page 80: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Summary

Take Home Messages

Page 81: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 81

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 81

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 81

Summary / Take Home Messages

Tribal Nations and urban Indian programs differ in their opinions about biospecimens and biobanking

You need to understand if your tribal Nation has a formal position about taking part in biospecimen research

If you choose to take part, you have rights (informed decision-making)

Page 82: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 82

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 82

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 82

Summary / Take Home Messages

A biobank / repository CAN be limited to a single study … but you need to ask to confirm this is true if that is important to you or your tribal NationSome specimens (e.g., hair or blood) may have tribal sanctions prohibiting donations to biobanks

Page 83: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 83

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 83

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 83

Summary / Take Home Messages

There are both potential benefits and drawbacks to taking part in genetic tests and research.

The individual needs to understand one’s tribal Nation’s perspectives and review the potential impacts to make an informed choice.

Page 84: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Post-Workshop Knowledge 2 Items

Page 85: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

85Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

Which is/are TRUE about Biobanks and Biospecimens?

1 2 3 4 5

20% 20% 20%20%20%1. All Biospecimens have DNA

2. Almost all biobanks are managed by federal agencies

3. Biospecimens can be used to diagnose a health condition

4. Urine is an excellent source for DNA

5. Don’t Know / Not sure

Page 86: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

86Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles

Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org

For which issue do most American Indian and Alaska Native tribal / village communities

object/oppose?

1 2 3 4 5

0% 0% 0%

33%

67%

1. AI/AN specimens used for a single study with informed consent

2. A biospecimen DNA research study on obesity genetic markers

3. Tribal / Village ownership and control of data and biospecimens

4. AI/AN biospecimens used to create patents (e.g. medications)

5. Don’t Know / Not sure

Page 87: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Workshop Evaluation

4 Items

(you won’t see the results on the screen)

Page 88: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org 88E_undrst1a

Overall, this session was understandable to me.

1 2 3 4 5

33%

67%

0%0%0%

1. I strongly agree

2. I agree

3. I don’t agree

4. I strongly disagree

5. I don’t want to answer

Page 89: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org 89E-useful

Overall this session provided useful information to me.

1 2 3 4 5

67%

33%

0%0%0%

1. I strongly agree

2. I agree

3. I don’t agree

4. I strongly disagree

5. I don’t want to answer

Page 90: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org 90E_quality

Overall, the quality of the content was appropriate for me

1 2 3 4 5

67%

33%

0%0%0%

1. I strongly agree

2. I agree

3. I don’t agree

4. I strongly disagree

5. I don’t want to answer

Page 91: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native Cancer 101 Module 8: Biospecimens and Biobanking; Mayo Clinic’s Spirit of Eagles Community Network Programs [NCI U01 CA 114609] http://www.NatAmCancer.org 91E_rec

Would you recommend this workshop to your friends or colleagues (who already have

general knowledge about cancer)?

1 2 3 4

0% 0%0%0%

1. Yes

2. Maybe

3. No

4. Not Sure

Page 92: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 92

Thank you for allowing us to share the current version of this Native

Cancer 101 module with you

Page 93: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 93

For further information

Judith S. Kaur, MD Spirit of E.A.G.L.E.S.

Charlton 6Mayo Comprehensive Cancer Center

200 First Street, S.W.Rochester, MN 55905

Phone: (507) 266-3064 Fax: (507) 266-2478

[email protected]

Linda Burhansstipanov, MSPH, DrPH

Native American Cancer Initiatives, Inc. (NACI)

3022 South Nova Road Pine, CO 80470-7830 Phone: 303-838-9359

http://www.NatAmCancer.org

Mayo SoE Native Cancer 101 Working GroupsPaulette A. Baukol, BS Dana Kontras. RN, MSNLinda Burhansstipanov, MSPH, DrPH Kerri Lopez, BA

Scientific Expertise: Lynne T. Bemis, PhD, Head of Biomedical Sciences Department, University of Minnesota School of Medicine, Duluth Campus

Page 94: Native Cancer 101 Module 8: Biospecimens and Biobanking (Community version) estimated time: 2 hours with Participant interactivity 02-01-2013 version +

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http://www.NativeAmericanPrograms.org / http://www.NatAmCancerInitiatives.org 94

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 94

Native American Cancer Initiatives, Incorporated (NACI) and Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]

http: NativeAmericanPrograms.org / http:///www.NatAmCancerInitiatives.org 94

AcknowledgementsThank you

Katherine J. Briant, MPH, CHESCommunity Health Educator

Center for Community Health PromotionFred Hutchinson Cancer Research Center

1100 Fairview Ave. N., M3-B232P.O. Box 19024

Seattle, WA 98109Tel:  206-667-1137 Fax:  206-667-5977

for drafting original slides for objective 1, Module 8: Biospecimens and Biobanking


Recommended