Tag Archives: breast cancer

23andMe Has Changed

Now on the 23andMe.com website:

Welcome to 23andMe.

At this time, we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.

We are continuing to provide you with both ancestry-related genetic tests and raw genetic data, without 23andMe’s interpretation.

If you are an existing customer please click the button below and then go to the health page for additional information, including information about refunds.

We remain firmly committed to fulfilling our long-term mission to help people everywhere have access to their own genetic data and have the ability to use that information to improve their lives.

Upon entering the site, please confirm you understand the new changes in our services.

I first got interested in the 23andMe DNA testing after hearing about Angelina Jolie having a preventive double mastectomy. Most adoptees don’t have the genetic information of their ancestors that would lead them to go to their doctors and order the specific test required to see if they carried the gene that could lead to breast cancer. We have to rely on regular mammograms and doctors’ visits, hoping that cancer would be caught in time. However, since annual mammograms are not recommended until age fifty, and many cancers start well before fifty, we adoptees could be in added danger without knowing our family history.

I procrastinated. I was a little nervous to get tested. I’d already done a DNA test with Ancestry.com and found many distant relatives. None genetically close. No 1st or 2nd cousins. After seeing so many people “like” the website on Facebook, I finally got the nerve to order the test from 23andMe. The immediate reply I got was that the test was not available in Maryland, where I live. When my daughter moved to Virginia I decided to order the test using her address. That would fool them. They’d never know. I’d finally get a little, long overdue, genetic information. Haha, they fooled me. Again, I waited too long. By the time I went online to order the test, it was too late. The FDA ordered them to stop testing.

I wondered why. Are they afraid we wouldn’t know what to do with the information? Are they afraid we’d all go out and do something rash, like see a doctor, if we learned we had a potentially dangerous gene? Most people who aren’t adopted have an alcoholic uncle who shows up at family gatherings. Do they stop having children because they might have an alcoholic gene? Or if their aunt died from ovarian cancer, do they run out and get a hysterectomy?  What is the FDA afraid of?

I would like to get tested. For $99, I’m sure I wouldn’t get the same info that Angelina Jolie got for $5,000. But this test might lead me to go to my doctor and ask more questions. Perhaps order more tests. Or specific tests. It’s the unknown that scares me. I want to know more. Please.

What do you think? Maybe the government, or the FDA, could offer a basic gene screening with the results going directly to our doctor. That way, when the doctor asks me for the hundredth time, is there anyone in your family…? I don’t have to answer, “I’m adopted. I don’t know.”

What are your thoughts?

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Angelina Jolie had Mastectomy to Reduce Breast Cancer Risk

Hollywood star Angelina Jolie announced to the world that she had a double mastectomy to reduce her chances of getting breast cancer. She says she hopes her story will inspire other women fighting the life-threatening disease.

Jolie wrote in the New York Times on Tuesday the operation had made it easier for her to reassure her six children that she will not die young from cancer, like her own mother did at 56.

“Like her own mother did.”

Jolie, for whom money is no object, chose to pay the $3,000 to be tested to see if she carried the faulty gene which would put her at a higher risk for both breast and ovarian cancer.

When she tested positive, Jolie said her doctors had estimated she had an 87 percent risk of breast cancer and 50 percent risk of ovarian cancer. “Once I knew this was my reality, I decided to be proactive and to minimize the risk as much as I could. I made a decision to have a preventive double mastectomy,” she said.

As an adoptee, when I go to my doctor and I’m questioned about my family medical history, all I can answer is, “I’m adopted. I don’t know.” For millions of adoptees like me with no medical information, we are at a loss. We don’t know if we are at risk for breast cancer. We don’t know if we should spend $3,000 to see if we carry the faulty gene. We don’t know if we are at risk for heart disease, or diabetes. We just don’t know.

When will adoptees finally be able to get access to their family history, their medical backgrounds, and other vital life-saving information? When will all adoptees be able to have access to their original birth certificates which most likely hold clues to information that could save their lives and the lives of future generations? When will the Federal Government step up to the plate and unseal the birth certificates of all adoptees rather than leave that determination to individual states? I was born in New Jersey. Governor Christie vetoed a ruling that would have allowed adoptees to get their birth certificates saying changes were needed “to avoid any unwanted breaches of privacy, and the potential chilling effect on adoptions.”

What chilling effects? From reading many letters from birth mothers, they want to know that the child they gave birth to is healthy and happy. Many women who gave birth before adoptions were legal also fought to pass the bill saying the adoption agencies never promised confidentiality. If Governor Christie won’t unseal my birth certificate my only other hope is to wait for the Federal Government to unseal my birth certificate.

But I’m tired of waiting. Everyone involved in my adoption has passed away. Will I have to wait until I’m buried to obtain my original birth certificate?

I’d love to hear your thoughts.