1. The Michigan PBB Registry Community Discussion Sharing Research Findings Seeking Input from PBB Registry Participants

2. Michigan PBB Registry Family History Table Family History Table – Indicate who worked at the Chemical Plant or was otherwise exposed – Then list their children and grandchildren If you are waiting to participate If you are waiting to participate – A volunteer will be holding up index card with number At the Transfer of Records Table you will get your PBB ID or use the Lab ID in your folder At the Transfer of Records Table you will get your PBB ID or use the Lab ID in your folder

3. Nutrimaster Firemaster PBB MgO

4. Nutrimaster Firemaster PBB MgO

5. Timeline July 1973-May 1974 July 1973-May 1974 – Michigan residents ate dairy, beef, and poultry products that had been contaminated with PBBs 1976-1979 1976-1979 – Creation of the PBB Registry (MI long-term PBB study) – Measurement of PBB in blood – Health questionnaires 1980 1980 – PBB no longer produced in the United States

6. PBB Registry Long-Term PBB Study About 5,000 individuals About 5,000 individuals People who ate contaminated food People who ate contaminated food – Farm families – Michigan residents Chemical company workers Chemical company workers Children of people who ate contaminated food; children of chemical workers Children of people who ate contaminated food; children of chemical workers

7. PBB Characteristics Exposure – contaminated food, inhalation, skin absorption Exposure – contaminated food, inhalation, skin absorption Stored in body fat Stored in body fat Remain in the body for many years Remain in the body for many years – After 15 years, about half of the PBB has been eliminated from the body Can mimic or block natural hormones Can mimic or block natural hormones Can be transferred from mother to child in the womb or through breast milk Can be transferred from mother to child in the womb or through breast milk

8. How is PBB Exposure Measured? Blood is collected Blood is collected Serum is extracted Serum is extracted Internal standard and acid added Internal standard and acid added Extract twice with solvent Extract twice with solvent Remove fats Remove fats Concentrate volume Concentrate volume

9. Risk of Developing Disease Risk varies among individuals Genetics Genetics Diet, Exercise Diet, Exercise Occupation Occupation Environmental Exposures Environmental Exposures

10. PBB Registry Research Compare the health of people with high vs. low PBB exposure Compare the health of people with high vs. low PBB exposure – The low exposure group includes about 1,000 people with no PBB detected in their blood. – Even if PBB was not detected in blood, people may have PBB in their fat tissue Compare the health of everyone in the PBB Registry to the general population. Compare the health of everyone in the PBB Registry to the general population. Periodic surveys to collect information on health Periodic surveys to collect information on health Some research on specific subgroups (e.g. chemical workers, women, daughters or sons) Some research on specific subgroups (e.g. chemical workers, women, daughters or sons)

11. Health Effects Noted Soon After the PBB Incident Skin rashes Skin rashes Hair loss Hair loss Memory problems Memory problems Muscle and joint problems Muscle and joint problems Slight differences in immune system and liver function Slight differences in immune system and liver function

12. Research Findings MI Chemical Workers Higher PBB concentration in serum and fat compared to family members Higher PBB concentration in serum and fat compared to family members Higher rates of skin symptoms compared to farmers Higher rates of skin symptoms compared to farmers High rates of hypothyroidism than general population High rates of hypothyroidism than general population Sperm count and motility similar to general population Sperm count and motility similar to general population

13. Research Findings Farm Families Those who ate contaminated food Research Findings Farm Families Those who ate contaminated food Men who ate contaminated food Men who ate contaminated food – Thyroid problems Women who ate contaminated food Women who ate contaminated food – Possible changes to menstrual periods – Lower estrogen levels – A few more cases of breast cancer than expected – No increase in endometriosis, infertility or miscarriages

14. Research Findings Children Born After 1973, to Women Who Ate Contaminated Food PBB can be transferred to children while in the womb or through breast milk PBB can be transferred to children while in the womb or through breast milk Children born many years later can still be exposed Children born many years later can still be exposed Children are more vulnerable to toxic chemicals than adults Children are more vulnerable to toxic chemicals than adults

15. Research Findings Daughters Born After 1973, to Women Who Ate Contaminated Food Earlier maturation - First menstrual period at 11.5 years compared to 12.5 years Earlier maturation - First menstrual period at 11.5 years compared to 12.5 years Shorter stature Shorter stature As adults - more miscarriages As adults - more miscarriages

16. Miscarriages Among Daughters

17. Research Findings Among Sons Born After 1973, to Women Who Ate Contaminated Food More genital conditions (hypospadias) than the general population More genital conditions (hypospadias) than the general population Sons of highly exposed women were more likely to have problems with the urinary or genital system Sons of highly exposed women were more likely to have problems with the urinary or genital system Sons of highly exposed women had slower growth in childhood Sons of highly exposed women had slower growth in childhood

18. Research Findings Important Points PBB appears to be acting as an “endocrine disrupter” PBB appears to be acting as an “endocrine disrupter” – Thyroid – Reproductive system Children of exposed parents may be affected Children of exposed parents may be affected

19. Chemical Workers Bring chemical workers back into PBB registry – transfer records from MDCH Bring chemical workers back into PBB registry – transfer records from MDCH Blood testing for PBB, PBDE, PCB, DDT, DDE, HBB Blood testing for PBB, PBDE, PCB, DDT, DDE, HBB General Health Questionnaire General Health Questionnaire What are your concerns? What are your concerns?

20. PBB Levels, St. Louis

21. PBB Levels, Consumers of contaminated food

22. PBB Levels, 1976-1978

23. Women’s Health Aged 18 - 57 Reproductive Health questionnaire (online) Reproductive Health questionnaire (online) Measure PBB and other chemicals in blood Measure PBB and other chemicals in blood Menstrual cycle calendar Menstrual cycle calendar Measure hormones in urine Measure hormones in urine

24. Women’s Hormone Patterns

25. Men’s Health Health questionnaire Health questionnaire Measure PBB, PCBs, DDT, DDE, HBB and PBDE in blood Measure PBB, PCBs, DDT, DDE, HBB and PBDE in blood Hormones in urine Hormones in urine Semen collection at home Semen collection at home

26. Sperm Assessment Sperm count Sperm velocity Sperm size and shape Sperm viability

27. Why Participate? Contribution to science, public health and your neighbors Contribution to science, public health and your neighbors Information about your chemical exposure Information about your chemical exposure Your hormone levels Your hormone levels Information about your menstrual cycles (for women) Information about your menstrual cycles (for women) Semen analysis (for men) Semen analysis (for men) – Physical exam Compensation (up to $200) Compensation (up to $200)

28. Additional Ongoing Research Study causes of death for PBB Registry participants (now including chemical workers) Study causes of death for PBB Registry participants (now including chemical workers) Continue to study cancer occurrence Continue to study cancer occurrence Study additional concerns suggested by you Study additional concerns suggested by you

29. We Need Your Help What are your concerns? What are your concerns? Michigan Health Department can no longer maintain the registry Michigan Health Department can no longer maintain the registry

30. For Questions or for More Information Please Contact us! PBB Registry Study Phone: 1-888-892-0074 E-mail: www.pbbregistry@emory.edu Website : www.pbbregistry.emory.edu Funding provided by National Institute of Environmental Health Sciences US Environmental Protection Agency Centers for Disease Control and Prevention

31. Small Group Discussions Seeking Input from PBB Registry Study Participants

32. Why community engagement? The research needs to be relevant to those who experienced exposure to PBB and other chemicals. The research needs to be relevant to those who experienced exposure to PBB and other chemicals. Your concerns help guide future research.

33. PBB Citizens Advisory Board

34. – Resource for registry members – Assist researchers in reaching out to PBB community – Work with the researchers to plan research that is responsive to the PBB community needs and interests.

35. Group Discussion How this will work… Small Group Discussion Small Group Discussion – Move chairs into small groups – Facilitator for each group – Each person is allotted at least 1 minute of input – Facilitator records each person’s comments without names or other identifying information – Facilitator notifies each person of time limit – Second round, anyone may add additional thoughts Large Group Share Large Group Share – Reporters summarize major points and suggestions from their table

36. Discussion Topics: Describe your continued concerns related to PBB and other chemical exposures. Describe your continued concerns related to PBB and other chemical exposures. What kind of information would be helpful regarding chemical exposures? What kind of information would be helpful regarding chemical exposures? Format: Each person allotted 1 minute for input. Each person allotted 1 minute for input. Then, any person may add additional comments until end of the discussion. Then, any person may add additional comments until end of the discussion.

37. Small Group Discussions