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

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Presentation on theme: "Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605]"— Presentation transcript:

1 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 1 Native Cancer 101 Module 4: Role of Genes in Cancer (BASIC Community version) estimated time: 120 minutes with Participant interactivity version Linda Burhansstipanov, MSPH, DrPH Native American Cancer Initiatives, Incorporated (NACI) 3022 South Nova Road Pine, CO Lynne Bemis, PhD, Head of Biomedical Sciences Department University of Minnesota School of Medicine, Duluth Campus

2 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 22 Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; Native American Cancer Initiatives, Incorporated (NACI) 2 For further information Spirit of E.A.G.L.E.S. Charlton 6 Mayo Comprehensive Cancer Center 200 First Street, S.W. Rochester, MN Phone: (507) Fax: (507) Kerri Lopez, BA Northwest Portland Area Indian Health Board 2121 SW Broadway, Suite 300 Portland, Oregon Phone: Fax: Mayo SoE Native Cancer 101 Working Groups Paulette A. Baukol, BS Dana Kontras. RN, MSN Linda Burhansstipanov, MSPH, DrPHKerri Lopez, BA Scientific Expertise: Lynne T. Bemis, PhD, Chair of Biomedical Sciences Department, University of Minnesota Medical School Duluth

3 Please turn off your cell phones or switch them to “vibrate” mode

4 Native Cancer 101 Module 4 (Role of Genes) Objectives. By the end of this session the participant will be able to: 1.Define basic genetics terminology 2.Describe the role of genes in cancer and cancer treatment 3.Describe the benefits and limitations of genetics testing 4.Discuss the benefit of recording your family health history

5 Introduction and overview

6 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 66 Genetics is not new information for AIANs Our ancestors knew how to Grow stronger, more disease-resistant crops (e.g., corn and squash) Breed horses (Pintos, Appaloosa) so that their coloring blended with rocks, ground or aspens during the winter ©Bev Doolittle. Used by permission of The Greenwich Workshop, Inc. for inclusion in this slide presentation, handout only

7 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 77 Genetics is not new information for AIANs The concept of genetics is not new, but: How genetics is being used today New words created to describe genetic science today New cultural issues for protecting privacy of individual and tribal Nations today New science that can be generated to help address common health problems (diabetes, cancer) among Natives today... Those are new ideas and concepts for AIANs

8 Objective 1: Define basic genetics terminology genes, chromosomes, DNA, mutation, heredity

9 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 99 What are “genetics”? What are “genes”? “Genetics” is the study of “genes” “Genes” contain the information for the body to function Some genes make bones strong Other genes help prevent cancer (tumor suppressor) A gene is a segment within a chromosome

10 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 10 Chromosomes Chromosomes are packed with thousands of genes Genes tell our cells what to be and how to act

11 3 = History 6 = Intelligence 10 = Cortisol and Stress 11 = Personality 12 = ability to dev human body from a fertilized egg 13 = BRCA 2 14 = telomeres15 = Sex16 = learning 17 = Apoptosis 18 = gene therapy 19 = cholesterol 20 = PRP 21 = Down’s Syndrome 22= HFW and “Free Will” Y = maleX = female 4 = Fate2 = Species 1 = Life5 = Environment 8 = Self- Interest 7 = Instinct 9 = ABO Blood Group

12 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 12 Chromosomes (continued) DNA (Deoxyribonucleic Acid) molecules refer to the genetic information that is within the chromosomes Chromosomes are in the “nucleus” (“brains” of the cell) Chromosomes are packed with thousands of genes Genes tell our cells what to be and how to act

13 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 13 More about “Genes” and “Mutations” The pattern of information within genes needs to follow a specific sequence for the cell to function correctly. When the sequence differs, it is called a “mutation” (or SNP, pronounced “snip”) Everybody has mutations (or SNPs) that may cause: No effect on the function of the gene The gene to continue having the normal function

14 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 14 Example: p53 (“The Big Guy”) The gene to do something different than what it was supposed to do Human chromosomes have a segment of a gene called “p53” Dr. Bemis calls “p53”, “The Big Guy” More than half of all tumors have damage in the area of the gene that makes up “p53” p53 helps protect the body against cancer p53 is a tumor suppressor Unless it is damaged (mutation)

15 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 15 More about “Genes” (continued) The nucleus has genetic information provided from your mother and from your father. The human body has about 20,000 genes. Every human being is 99.9% similar to any other human being That 0.1% of genetic information is why and how we look and are different from one another

16 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 16 QUESTION: What does “heredity” mean? Heredity” means that the characteristic came from the sperm and egg (from your dad and mom) when you were conceived in the womb 23 chromosomes from dad (sperm) and 23 from mom (egg); a copy of each chromosome to fertilized egg

17 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 17 Causes of Cancer Daily Behavior / Lifestyle (not enough physical activity, unhealthy food, excess alcohol, habitual use of tobacco) = cause changes in genes within body cells Environment (exposure to contaminants, e.g., asbestos) = cause changes in genes within body cells Heredity (chromosomes from mother and father that created the fertilized egg that resulted in the child) = only 5-10% of all cancers

18 Objective 2: Describe role of genes in cancer

19 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 19 Role of genes in cancer Only a small group of mutations directly associated with cancer risk are inherited from the parents Other (i.e., “most”) mutations are acquired over the life span Multiple injuries occur to the same cell to evolve or result in cancer “Injuries” can be from alcohol abuse, exposure to commercial tobacco, bacteria, virus, inactivity, unhealthy diet

20 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 20 Role of genes: mutations The injury is a mutation resulting in damage that is passed on from the first body (somatic) cell as it divides into additional cells It gives the cells harboring the mutation an advantage to outgrow other cells For example in lung cancer the carcinogens in cigarette smoke may cause damage in several genes

21 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 21 Role of genes: mutations (continued) One change may allow the cells to grow out of control while another may cause the cells to be resistant to therapy Multiple injuries are required before the cells are changed enough to allow them to grow out of control For most solid tumors, 5-10 separate “injuries” occur before the cell becomes cancer

22 Interactivity: Chromosome Ropes Rope chromosomes (100,000 of times larger than actual chromosomes) Telomere Centromere “Single Nucleotide Polymorphism” (SNP) / mutation p seqment q segment Longest chromosome =1; Shortest chromosome = 22 Germ (sex) cells (2)

23 Interactivity: Chromosome Ropes Please work in pairs Each envelop has an enlarged, but proportional rope Please look at the chromosome What is the number of your chromosome? Where is the “centromere”? Do you have a “Single Nucleotide Polymorphism” (SNP)? Where is the SNP located? p? or q? What disease is related to your SNP?

24 Make a copy of the chromosome you are using from the 2 nd envelope (clipped) In your pairs, please make 2 chromosomes that match the ones provided from the 1 st envelope You will have a total of 4 rope chromosomes; please return the original 2 in the envelope Each of you should have a pair of rope chromosomes One of you is from the male (sperm) and the other is from the female (egg)

25 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 25 Role of genes in cancer (continued) A variety of genes are known to be ‘injured’ in cancer. Two overall types of injuries occur Those that block the expression of “Tumor suppressor” genes like p53, BRCA1 and BRCA2 Those that activate oncogenes (genetic markers / SNPs that contribute to cancer) KRAS, BRAF, EGFR

26 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 26 Chromosomal changes in Cancer There are frequent mutations in cancer cells Sometimes there are large rearrangements Sometimes there are deletions of part of a chromosome Sometimes there are small changes that may only be detected with PCR or other genetic tests. NOTE: PCR stands for polymerase chain reaction. This is the method that allows researchers to copy and amplify almost any piece of DNA to better understand it. Many of the genetic tests currently in use require PCR as part of the process of determining if the patient has a SNP

27 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 27 Chromosomal Changes in Cancer Sometimes a test can be developed that looks at large regions of DNA changes Other times a few regions of a gene are examined BRCA1 and BRCA2 are very large genes known to harbor many mutations that may be passed from the parent to child

28 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 28 QUESTION: What is a BRCA2 mutation? BRCA2 is a protein that helps to repair certain kinds of damage to DNA BRCA2 is a very large gene composed of 84,188 base pairs Hundreds of mutations have been discovered in BRCA2 and some are associated with certain ethnic groups SEE YELLOW LAMINATED SHEETS WITH BRCA2 SUMMARY INFO (or use the following yellow slides end of module)

29 29 Scenario: Mary Lou (your sister) was just diagnosed with breast cancer Please form groups of 4 and review the yellow laminated BRCA2 summary) BRCA2 is a genetic form called “BRCA2” (BR from “breast” and CA for “cancer” and “2” because it was the 2 nd hereditary breast cancer gene Catherine, your other sister doesn’t know if she is carrying the same type of genetic marker (BRCA2) What additional information do you want before you decide whether to have the BRCA2 test?

30 Objective 3: Describe potential benefits and drawbacks of genetics testing

31 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 31 Mary Lou Scenario continued The BRCA2 test is expensive ($1200). Who will pay for the test? What are your options? Will IHS pay for BRCA2 testing? Who do you think SHOULD pay for the test? Do you know of any clinical trials in your area that may pay for the BRCA2 test? How would you find such a clinical trial?

32 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 32 Scenario continued Catherine (Mary Lou’s sister) decided to have the test and her results were negative. How does that impact or affect your potential test results? Craig is your older brother. He is having problems with an enlarged prostate. Mary Lou told him that BRCA2 is related to prostate cancer in men. Now Craig is fretting.

33 Using BRCA2 As An Example Having the marker (BRCA2) does not mean you will develop cancer The marker indicates a predisposition Every single person has a BRCA2 gene, but only a few have a mutation Populations at risk are on following page

34 Using BRCA2 As An Example Populations who may carry the mutation BRCA2 mutation(s) Result of the mutation Ashkenazi Jewish 6174delT A deletion of a T base results in a shorter than normal protein Dutch5579insA An extra base (A) causes altered expression of the protein French Canadians 8765delAG In this case two base pairs are missing

35 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 35 Possible Personal Benefits of Genetic Testing QUESTION: What are examples of some ways that an individual may personally benefit from participating in genetic tests? Medical and lifestyle choices are available for selected conditions Learns whether s/he does or does not have an altered gene Learns to cope with the personal risk

36 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 36 Possible Personal Benefits of Genetic Testing Decide whether or not to have surgery (possibly protective surgery) Provide useful information to other family or tribal members Contribute to research If people know that “genetic” risk is not the cause of disorder, more likely to address behavioral / lifestyle “risks” Change behavior (e.g. take part in screening)

37 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 37 Possible Personal Benefits of Genetic Testing More effective and efficient treatments tailored to the individual An example is the relatively new field of science called, “pharmacogenetics” The study of medications and genetics

38 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 38 How Might the Tribe or Other Native Americans Benefit by an Individual Participating in Genetic Testing? Information about common conditions may be helpful to others Communities can focus on behavior changes rather than assume “fatalistic” attitude about a disease

39 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 39 Possible Drawbacks to Genetic Testing A genetic “mutation” that NEVER results in a disease (i.e., worry about “nothing”) What does “lifetime risk” mean? How does “lifetime risk” relate to tribal beliefs or cultural mores? Genetic “mutation” may be present, but there may not be “treatment”

40 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 40 Possible Drawbacks to Genetic Testing The test may be limited to only one part of a gene, and not the part of the gene that has the mutation (the test is “limited”) The test may be inaccurate “false positives” or “false negatives” Negative test results may provide a false sense of security An individual may find it harder to cope with the cancer risk when s/he knows the test results

41 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 41 Possible Drawbacks to Genetic Testing You may be asked to disclose genetic test findings that may result in the participant: Losing health insurance coverage Other family members losing their health insurance Losing his/her job NOTE: Federal and state laws are supposed to protect against such outcomes, but they are imperfect

42 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 42 Genetic Information Nondiscrimination Act of 2008 (GINA), a Federal law Prohibits discrimination in health coverage and employment based on genetic information generally prohibits health insurers or health plan administrators from requesting or requiring genetic information of an individual or the individual’s family members, or using it for decisions regarding coverage, rates, or preexisting conditions. The law also prohibits most employers from using genetic information for hiring, firing, or promotion decisions, and for any decisions regarding terms of employment

43 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 43 How Might My Tribe or Other Native Americans by Harmed by My Participating in Genetic Testing? Tribal ordinances against participating in “genetic research” (genetic testing may be included in genetic research) “Genetic testing” is an individual decision, there should be little opportunity for harm to the Tribal community

44 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 44 Native American Cultural and Ethical Issues related to Genetic Testing NOTE: Due to projects such as HGDP targeting Aboriginal Peoples, communities are suspicious of any program involving “genetics” Native people being encouraged to take part in genetic testing by being given rewards... without being told the risks of genetic tests.

45 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 45 Native American Cultural and Ethical Issues related to Genetic Testing Native people being tested without being given enough information to make an “informed” decision Native people being tested without having their rights to privacy and confidentiality “protected” Native people being tested without having test results clearly explained (no genetic counseling)

46 Objective 4: Discuss the benefit of recording your family health history slides from NACI GENA® objective 22 (used with permission from Linda B)

47 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 47 Reasons Family Histories May be Important Accurate Family Histories are needed to determine if a cancer risk is likely to be hereditary or from other causes (daily behaviors, exposure to environmental contamination) Helps the genetic counselor work with the patient to decide whether or not the patient is genetically at high risk for a condition and should have a genetic test (most cancer genetic tests are expensive)

48 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 48 Reasons Family Histories May be Important (cont.) Helps the provider make a diagnosis Clarifies daily behaviors versus inherited risks for people who are adopted May reveal patterns of inheritance within the family Clarifies family myths regarding who in the family is at risk Helps explain why some members of the family are not affected

49 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 49 1.Name 2.Date 3.Age 4.Ethnic Background 5.Do you have any specific concerns about cancer in yourself or your family? 6.Do you or any members of your family have a history of cancer? Sample Cancer Family History Questionnaire

50 Yes / No Type of Cancer (if known) Age at Dx Living / Deceased yourself your mother your father your sisters & brothers your children your mother's sisters & brothers your father's sisters and brothers your nieces & nephews your mother's parents your father's parents

51 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 51 Example of Culturally Inappropriate Family History Data Collection by Epidemiologists during the Hanta Virus Infection CDC scientists demanded to interview the surviving family members immediately following the patient’s death Researchers unaware / unwilling to be educated by local Native physician of local cultural beliefs requiring no discussion of the deceased for 3 days

52 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 52 Example of Culturally Inappropriate Family History Data Collection by Epidemiologists during the Hanta Virus Infection Family forced to violate cultural practices = very difficult ceremony Researchers given inaccurate information Alienated the local AI community Video Role Play of poor family history collection Video role Play of good family history collection

53 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 53 Family History Data Collection Cautions Asking the patient and/or family members personal information about their ancestors and immediate family Some tribes are prohibited from discussing family members who have “walked on” / “passed away” / died Cannot use their name Cannot refer to them directly via relationship (“mother”, “father”)

54 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 54 Family History Data Collection Cautions Violations of these cultural practices can result in the family having to do timely and expensive ceremonies Linear format of family / Family History collection process frequently results in erroneous information Encourage patient to “tell a story” Be careful about how we talk about our relatives (“my daughter”)

55 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 55 “First Degree Relative” vs. Indian Adoption Note: some tribes use maternity for tribal affiliation rather than paternity Cancer risk genetic tests typically focus on first degree relatives (FDRs) Mother, Father Sisters, Brothers Children Spiritually, adopted children are regarded as FDR by AIANS, but NOT so for genetic family trees … question: “did you come from the same womb as your brother?”

56 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 56 “First Degree Relative” vs. Indian Adoption Indian cultures actively support adoption of others who need or want assistance / guidance Cousins, aunties, uncles, other relatives Other members / children / youth of the community Friends / their children / youth Challenging to distinguish among “blood” relatives and “adopted” relatives via AIAN beliefs

57 Summary / Take Home Messages

58 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 58 Summary; Take Home Messages The most common risks for developing cancer are daily behaviors (diet, exercise, tobacco exposure, alcohol excess) Our ancestors understood genetics very well (that is why we have marriage rules) New scientific words are used to describe much more detailed (molecular / genetic) levels of genetics “Chromosomes”, “genes” and “markers” are common words in the News today

59 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 59 Summary: Take Home Messages Healthy body (somatic) cells are damaged by daily behaviors or sometimes by exposure to environmental contaminants The same cells are injured 5-10 times before the cells begin to become cancer Researchers are using the new, detailed genetic and molecular information to tailor cancer treatments Some of these treatments are available already (e.g., colon, melanoma)

60 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 60 Summary: Take Home Messages Information collected during your family history can help the researchers understand your genetic or molecular information better Collecting family histories in Indian Country is challenging, in part because: Some tribal cultures prohibit the use of family relations who have passed on (e.g., you cannot say, “father” or “sister”)

61 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 61 Summary: Take Home Messages Most of our tribal Nations practice casual adoption of nieces, neighbors and others who need a home Once adopted, they are of our family spiritually … we do not distinguish siblings as coming from the same womb, but spiritually we are sisters

62 Burhansstipanov, Native American Cancer Initiatives, Incorporated (NACI) Mayo Clinic’s “Spirit of EAGLES Community Network Programs 2” [P.I. Kaur; U54CA153605] ; Northwest Portland Area Indian Health Board; 62 Thank you for allowing us to share the current draft of this Native module with you

63 Example of Chromosome 1 = Life; gene for lactase that is necessary to digest lactose, a sugar abundant in milk; most humans are born with this gene switched on in their digestive systems. The gene turns off and adults may have difficulty digesting lactose. One way around the problem is to let bacteria digest the lactose and turn the milk into cheese. Cheese, being low in lactose, is easily digestible for adults and children. A mutation in the control gene that switches off the lactase gene results in people who can drink and digest milk all through life. More than 70% of western Europeans by descent can drink milk as adults, compared with less than 30% of people from parts of Africa, eastern and southeastern Asia and Oceania (Ridley, p. 193)

64 Some facts about your life depend entirely on a single gene--for example, whether you'll get the dreadful degenerative disease Huntington's chorea, and if so, at what age Huntington disease (HD) is a neurodegenerative disorder caused by the addition of nucleotides within the HD gene. Huntingtin is the name for the very large protein that is disfunctional in HD.

65 Example of chromosome 10 = CYP 17 enables the body to convert cholesterol into cortisol, testosterone and oestradiol. Cortisol interferes with the immune system, changes sensitivity of the ears, nose and eyes, and alters various bodily functions. When you have a lot of cortisol, you are “under stress”. Cortisol and Stress are synonymous (Ridley, p. 149). Because cortisol interferes with the immune system when under stress, a person is more likely to “catch a cold” or other infections. Cortisol does this by reducing the activity, number and lifetime of lymphocytes (white blood cells)

66 Example of Chromosome 11 = Personality; The D 4 DR gene is one of the brain’s dopamine-mediated pathways. Dopamine pathways control the flow of blood through the brain. A shortage of dopamine in the brain causes an indecisive and frozen personality, unable to initiate even the body’s own movement… in the extreme = Parkinson Disease. An excess of dopamine = highly exploratory and adventurous or related to Schizophrenia. Too little dopamine and the person lacks initiative and motivation; Too much and the person is easily bored & frequently seeks new adventures. (Ridley, p. 163)

67 Example of Chromosome 14 = Immortality; TEP1 telomerase (top of the chromosomes) contains RNA which rebuilds telomeres (Ridley, p. 197) Note: Dolly the sheep’s descendents grow up “older” than other sheep because they have shorter telomeres so even though they were baby sheep they had older seeming chromosomes.

68 Examples of Chromosome 15 genes = Sex-related anomalies from missing chunks of chromosome from one of the parents Prader-Willi Syndrome: children born floppy and pale-skinned; refuse to suck at the breast, but later eat till they almost burst … never experiencing satiety; Or the opposite, Angelman’s syndrome: children born taut; thin, hyperactive, insomniac, small-headed, long-jawed, move jerkily; often stick out large tongues; BUT have happy dispositions, smiling and frequent outbursts of laughter (Ridley, p. 207). They never learn to speak; severely mentally retarded

69 Example(s) of Chromosome 17 genes = ced-9 or gene that helps old cells die (Apoptosis) Oncogenes and cancer Tumor suppressor genes turned off = cancer Gene that tells cells to commit suicide is TP 53 which makes p53. A mutation in TP53 is related to cancer (55% of all human cancers have damage to TP53 and 90% of all lung cancers have damage to TP53 ). (Ridley, p. 236) People born with one faulty version of TP53 out of the two they inherit have a 95% change of getting cancer and usually at an early age. Lynne calls p53, “the big guy” for this reason Colorectal cancer and APC and/or ras related to polyps

70 Example of Chromosome 20 = PRP (protease-resistant protein) and prions that reshape normal prions and how they “fold up”… 1986 and bovine spongiform encephalopathy … “mad cow disease”

71 71 NACI’s Edited Background Information BRCA2 Summary Fact Sheet Discovered: 1995 Location 13q12 Very large gene Tumor suppressor Genetics: Autosomal dominant transmission of germline alteration (mutation) Transmission of germline mutation by EITHER parent

72 72 NACI’s Edited Background Information BRCA2 Summary Fact Sheet (cont.) Germline mutation increases RISK for breast and ovarian cancers Cancer is a progressive process of different mutations that alter cell function. Eventually, cell function is altered so much that it becomes “cancerous”.

73 73 NACI’s Edited Background Information BRCA2 Summary Fact Sheet (cont.) An inherited susceptibility to cancer, like a germline mutation in BRCA2 gene, means that a person has inherited a “damage” which decreases the number of further acquired mutations needed for a cell to become cancerous. i.e., most “cancer” evolves after at least “two” damages

74 74 NACI’s Edited: Increased Cancer Risks for Mutations in BRCA2: Women Breast cancer Ovarian cancer (not as high as BRCA1 mutations) Men Breast cancer Prostate cancer

75 75 NACI’s Edited Increased Cancer Risks for Mutations in BRCA2: Other Cancers (risk for these may be slightly elevated over the general population) Colon cancer Pancreatic cancer Stomach cancer Cancer of the gallbladder Melanoma


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