Previvors and Survivors
My name is Sharlene Hesse-Biber and I am a Sociologist and Professor at Boston College.
I am conducting a study on women who have tested positive for the BRCA 1 and 2 genes. I hope to address the issue of why women seek this genetic testing and how they respond to a positive result, as well as the roles that other people in their lives play throughout the pre- and post- testing process.
I would like to set up a time to explore your experiences with genetic testing for the BRCA 1 and 2 genes. Such an interview would take about a half hour. Your participation in this research is completely voluntary, and if you choose to participate, you may withdraw from the study at any point throughout the project. I can interview you over the phone or if you are in commuting distance I can interview you in person.
I would also like to take a moment to tell you a little more about the study. I aim to address a current lack of research on women’s experiences with genetic testing for the genes linked to breast cancer and their responses to a positive result. Some of the questions we will explore are:
- How do women seek genetic testing for breast cancer?
- What is the lived experience of women who have received a positive result? How is this affected if they have a family history of breast cancer?
- What decisions, if any, do they make once they have a positive result? Is there a difference between their immediate and long-term decisions?
- What role do their immediate family network, close friends, and co-workers play in their decision to get tested and in their post-testing experience?
If you are interested in participating in this study, please email me at hesse@bc.edu. I am also happy to answer any questions or concerns you may have.
Thank you for your time and I look forward to hearing from you soon.
Sincerely,
Sharlene Hesse-Biber
Professor, Department of Sociology, Boston College
Director, Women’s and Gender Studies Program, Boston College
BRCA NEWSWORTHY
It’s not over yet, but right now the courts have ruled for the people! My favorite article thus far is: click here to follow the link:
Invalidation of gene patents will benefit patients
The article was written 4/3/10 & comes from the website: http://www.news-medical.net/news/20100403/Invalidation-of-gene-patents-will-benefit-patients.aspx
If the ruling is upheld genetic testing & diagnosis will be open to more companies. Competition will put more players into the field & hopefully will be beneficial for patients.
BRCA NEWSWORTHY
Go to our forum. Click on reader recommended links. Click on awesome breast cancer breaking news & follow the link for the story & the video. Canadian reasearchers decode breast cancer tumor DNA. This story was brought to my attention through: CTV.CA News.
The researchers decoded the patient’s metastic breast cancer & found all the mutations. If they can understand the mutations that cause cancer…they can cure it!
Another article also can be found in our same forum: More news out of Canada.
This article is titled: Tiny Chip Can Measure Estrogen in Breast Tissue. This story was brought to my attention by news.yahoo.com & the writer is: Julie Steenhuyser.
It’s a microchip device that can screen or see if breast cancer treatments are working by measuring estrogen levels. This research is still in experimental stages…but it gives us all a lot of hope.
BRCA NEWSWORTHY
New drug olaparib offers hope to women with genetic breast cancer by David Rose
Follow this link: http://www.timesonline.co.uk/tol/life_and_style/health/article6400852.ece
Olaparib is made by AstraZeneca & is being used in clinical trials to treat & or prevent cancer in high risk or BRCA families. They feel this drug is very promising in blocking the protein that makes cancer cells –causing only the cancer cell to either die or shrink. (BRCA patients have the mutated gene that is supposed to repair or fix damaged DNA—therefore when the repair doesn’t work properly mistakes in the DNA accumulate, do not repair & cancer develops.)
BRCA NEWSWORTHY
A lawsuit has been filed against Myriad Genetics & the Patent Office
This story has multiple links: If I understand it correctly, it goes like this:
This link explains a senate debate on 11/12/08 http://www.openaustralia.org/senate/?id=2008-11-12.32.1
There are three BRCA1 patents & one BRCA 2 patent in Australia. Myriad Genetics took out these 4 patents in the USA. Genetic Technologies LTD in Australia is the exclusive licensee of these patents. Therefore the MONOPOLY on BRCA testing!
The following two links further explain the lawsuit against MYRIAD GENETICS & the US Patent Office. Apparently, there is finally awareness & some people are outraged to know that there is a patent on BRCA gene research. This monopoly prevents further research by other interested parties. Myriad Genetics will argue that they have the rights to the patent & it enables them to invest in research & development of cures. The people (cancer patients, pathologists, & genetic researchers) feel that having more players involved will bring down costs to testing & research & cures. The lawsuit also challenges gene patenting in general.
Please feel free to add your comments people!
LINKS:
ACLU sues over patents on breast cancer genes from cnn.com on 5/13/09
By: Stephanie Smith & Caitlin Hagan http://www.cnn.com/2009/HEALTH/05/12/us.genes.lawsuit/
Cancer Patients Challenge the Patenting of a Gene from The NYtimes.com on 5/13/09
By: John Schwartz
http://www.nytimes.com/2009/05/13/health/13patent.html?_r=2&hp
BRCA NEWSWORTHY
- How do women seek genetic testing for breast cancer? Why do women choose to get tested for a condition that may or may not develop, or have control over?
- What is the lived experience of women who have had a positive result from their genetic test? How is this affected if they have a family history of breast cancer?
- What decisions, if any, do they make once they have a positive result? Is there a different between their immediate and long-term decisions
- What role do their immediate family network, close friends, and co-workers play in their decision to get tested and in their post-testing experience?
BRCA NEWSWORTHY
‘Cancer-free’ baby born in London
Follow this link for more on this article: http://www.cnn.com/2009/HEALTH/01/09/uk.cancerfree.baby/
Friday, 1/9/09 a very expensive genetically engineered baby girl was born in London, England free of the BRCA gene mutation.
This has become a very controversial subject! If an embryo has the BRCA mutation, it is discarded & not implanted in the mother. This becomes controversial because not everyone who has the BRCA gene mutation develops cancer.
WOULD YOU DO GENETIC SCREENING FOR YOUR EMBRYOS IF YOU COULD?
Feel free to leave your comments here…
BRCA NEWSWORTHY
Breaking the Chain by Wendy Elliman
Follow this link for the entire awesome article!
http://www.hadassah.org/news/content/per_hadassah/archive/2008/08_Nov/medicine.asp
This past June, twins were born at the Hadassah Hospital in Israel without the BRCA gene mutation. Embryos free of the mutation were implanted in the mother enabling her to “break the breast cancer chain” in her family & give birth to BRCA free babies. Six other BRCA positive couples also had the genetically BRCA free embryos implanted using in-vitro fertilization treatment. One of these couples gave birth in September, & the other 5 couples are expecting soon!
BRCA NEWSWORTHY
Scientists Decode Cancer Cell DNA 11/6/08 from CBS News NY
Follow this link: http://www.cbsnews.com/stories/2008/11/06/eveningnews/main4580721.shtml
CBS news medical correspondent Dr. Jon LaPook reported that scientists decoded the entire genetics of a cancer cell from a woman with leukemia. This helps scientists understand cancer & start to target cancer therapy to specific cancer cells. Hopefully, there will be personalized cancer treatments in the future which target the mutated DNA instead of what we generally have now- one size fits all cancer treatment!
BRCA NEWSWORTHY
How women cope with the results of BRCA testing for hereditary breast cancer
By Robert White
Follow the link for the entire article: http://www.topcancernews.com/news/1843/1/How-women-cope-with-the-results-of-BRCA-testing-for-hereditary-breast-cancer
Women with negative BRCA results had the lowest rates of worry & cancer related distress. Women who had inconclusive results (have no genetic mutation currently known to increase breast cancer risk) had similar levels of distress as those who tested BRCA positive. All women had less stress after being tested than before. The women with inconclusive results may still be at risk for breast cancer because of unrecognized mutations or other risk factors associated with family history of breast cancer. BRCA testing is stressful & best done with a genetic counselor who can help evaluate the results.