According to the National Cancer Institute, studies have indicated that women who carry these gene mutations have a 60 percent or higher risk of developing breast cancer over the course of their lives. That's right, sixty percent. Now how would you, dear legislator, dear Helene Weinstein (to name one who is adamantly opposed to open records in New York) like to be walking around carrying that gene inside you and not know it?
Yet Ms.Weinstein (of Brooklyn) and other legislators of her persuasion continue to block giving adopted adults their original birth records--the only way adoptees can realistically access their family medical histories. As it stands now, if you're adopted in 42 states, you're out of luck. The state claims that it is "protecting " women from being harassed by their children coming back and saying, Hello, can you tell me what I should be on the lookout for? Breast cancer in the family? Heart disease? Depression? PMDD? Oh, I'm not supposed to know anything because that might embarrass someone?
How anyone can justify keeping original birth records sealed--and preventing the six million adopted people from knowing their medical histories--is quite frankly beyond my comprehension. Given what we know about the importance of a medical history, keeping them from adopted people is a willful act of cruel and inhumane treatment. It is sacrificing the health and well-being of an entire class of people to protect the "privacy" of another--who, in all likelihood knows all the details of their family medical history.
Legislators who oppose open records (because it's going to bust apart their vision of the happy adopted family somewhere in their OWN family) hide behind the skirts of women who gave up their children. Instead of admitting they are looking out for the adoptive parents who support sealed records forever! they say that we first/birth mothers want to be, and thus must be, "protected" from our children. In fact, most of us desperately want to know the children we lost to adoption.
Apparently the legislators have not read the data (which we give them) that now overwhelmingly supports birth mothers in favor of open records. I'm looking at a draft of a study that may come out of the Evan B. Donaldson Institute soon, and the first item notes that "In one study, 82 percent of birth parents said they would be interested in meeting their children." In Tennessee, which has open records, 99 percent of the women were found to have welcomed contact from the children they surrendered for adoption. In other states with corresponding date (Arizona, New Jersey, North Carolina, New Mexico and Washington) 95 percent of the women share this view.
That's why this whole business of keeping the records sealed because of the promised secrecy is so bleepin' phony. If the legislators actually looked at the facts and figures of who wants to know what happened to their children and how they are, and who is going to drive their car into the river if the records are open, and balance some outrageous claim against the good that would come from giving adoptees access to the information of their birth, the records would be open in all 50 states tomorrow.
I'd like to strap Ms.Weinstein and a few other jokers in Albany (any any state capital) who oppose opening the records to a chair and make them watch back-to-back-to back episodes of The Locator where birth mothers are reunited with their children.
As for Ms. Raezer, she discovered a lump in her breast, and her doctor blew it off originally, but because she knew she had the mutated gene, she insisted on getting further testing, and indeed, what was thought to be a harmless cyst turned out to be malignant. She, along with her sister who was adopted, had both breasts removed. And today Ms. Raezer is the contented mother of a one-year-old. Her sister's name was not revealed because her adoptive parents do not know she searched and found her first biological genetic real family. Maybe they are friends of some legislator who votes against open records. But I digress.
How important is knowing your medical history? From the AOL story:
Carrie Zabel, MS, a genetic counselor with the Mayo Clinic in Rochester, Minnesota, says the story of Raezer and her sister is not surprising. Even though Raezer doesn't carry a mutation of one of the BRCA genes, it's possible there are other gene mutations carried in families that scientists haven't discovered yet. "For most families, these gene mutations are inherited," she says. "Therefore, looking at your family history is important." In a case like Raezer's it's especially important. "Being a young age at diagnosis is a red flag to a genetic predisposition," Zabel adds.
"Know your family history, and remember your dad's relatives are important, too," advised Zabel. She recommends that women begin performing monthly self breast exams at age 18 and that they make sure to receive a clinical breast exam from their doctor every year as well. While the standard recommendation for the general population is to start getting annual mammograms at age 40, Zabel says that even if you have a family history or a genetic marker, that doesn't necessarily mean starting mammograms earlier. In fact, a recent study published in the Journal of the National Cancer Institute suggests that the radiation from mammograms can actually put women with damaged DNA at even greater risk for cancer.
So even though knowing your family history might save your life, Weinstein and her ilk still stand at the gate and keep the records sealed. Why? Because they can.
And while legislators are rethinking their dumb and unjust position on sealed records, they ought to go the whole mile and allow the women who surrendered their childre access to the names and addresses of the parents who adopted them. To tell me I agreed to the sealed records is friggen' poppycock. It was sealed records or "We can't help you." And it was not written down in the papers I signed.
But don't get me started on this.--lorraine
We'd love to hear stories from anyone about what the lack of medical records has meant to them.