The Challenges and Impact of Human Genome Research for Minority Communities
from a conference presented by
Workshop I Summary
Facilitator: Dr. Eunice S. Thomas
Panelist Deborah Eunpu, Director of Genetic Counseling first informed us that there are Master’s programs available in Genetic Counseling. Genetics is about all of us and where we stand today. It’s what we do / do not talk to our children about. It’s about our family reunions. Genetic counselors are trained to specialize in the family’s needs. They determine how to work / in hospitals and communities. All of us need to understand who should have genetic testing / screening. It means working with two to three generations of the family. Information is available on msge.com and other Websites and in health departments.
Many primary practitioners are not trained in genetics. Genetic counseling is done with "this is what we can do" and "this might be helpful." They want to train more counselors in the minority community. Genetic counseling must work to make information accessible. Genetic counseling is helping families understand if there is a genetic basis and how it affects the individual. She stated that genetic counseling must understand what it means to a family (will it require special equipment in the home?) Is there prenatal testing? Do I have children? What are the family values that need to be considered?
Panelist, Dr. Mortimer Poncz, Professor of Pediatrics. In 1955, Dr. Sanger described how to sequence human protein (hemoglobin) and sickle cell. He received the first of two Noble prizes. In the 1970’s the gene for hemoglobin was characterized. He states that the DNA of sickle cell anemia has been studied for some time and because of his interest he began working with 300 sickle cell patients. Please note that in Africa, many children die before the age of three, because of sickle cell anemia.
Dr. Poncz also addressed Thalsamia, an Italian blood disease related to malaria. However, in contrast, this disease has decreased in Italy and Cypress. In Crete and Cypress no children are now born with Thalsamia. However, Dr. Poncz’ sickle cell patients have increased from 300 to 600. He does not understand where the medical and local communities stand in advancing research programs to decrease and eliminate the number of patients with sickle cell anemia. If Thalsamia can be eradicated, so should sickle cell anemia.
Panelist Zora Kramer Brown, Chair Breast Cancer Committee. Twenty years ago, Mrs. Brown had a breast cancer and it is in her family. She had a good diet and exercised regularly, but was still diagnosed with cancer. However, it was an early diagnosis. Three years ago, she had a recurrence of cancer.
In July 1997, a niece was diagnosed with breast cancer. Consequently, Mrs. Brown wrote a grant and brought in genetic counseling and an oncologist over the weekend for her family members for a retreat. One year later, the niece with breast cancer died. It propelled the other nine at the retreat to go with Mrs. Brown to Capitol Hill to speak out on this issue and also the issue of privacy. They met recently to discuss ways to pass on information of other family members. She preaches early detection and early prevention. Mrs. Brown "wants it out of the closet and into the headlines."
Questions and Answers
Q. How do we get the information from the industry to the community?
A. There are studies to find out how communities want to receive the information. The classroom may not be the best way. Information is put together on chips (in robotic fashion) for strokes, in order to determine risk factors. They will test for all stroke-related mutations (about 100 years hence).Q. Are certain families predisposed to learning disabilities?
Need to know if they are boys or girls?
What are the environmental exposures?
Are those with learning disabilities on one side of the family or the other side?
A. A family history should be studied to see what the pattern is.
Q. Any issues on getting insurance or health care as a result of having breast care?
A. No, except her health insurance skyrocketed because she was predisposed to breast cancer.
Q. What is the theory for the rise in the number of Dr. Poncz’ sickle cell patients?
A. Sickle cell is more dominant in certain parts of the country. It is also predominant in India and Saudia Arabia. Ten percent of the Black population carries the gene; only ˝ % of population actually has sickle cell.
The increase in Dr. Poncz’ patients may also be due to the good work [detection] his hospital is doing, and more patients are going there.
Then the discussion turned to testing during pregnancy. The question was asked, should a woman know of a predisposition to a disease. The pro’s and con’s were debated.
Incidentally, the disease Thalsamia declined, mainly due to a church program that counseled people with the disease and encouraged them not to marry and have children.
Q. Will insurance companies pay for genetic counseling?A. It depends on the testing and diagnosis and reason for it. Carrier testing may not be paid for.
Dr. Eunice S. Thomas encouraged the members of Zeta Phi Beta Sorority, Inc. to write their congresspersons to encourage payment for this testing.
|The online presentation of this publication is a special feature of the Human Genome Project Information Web site.|