Brca Quotes

If a relative has suffered Ovarian or Breast Cancer, get the genetic screening. It saves lives.

Gene patents are the point of greatest concern in the debate over ownership of human biological materials, and how that ownership might interfere with science. As of 2005—the most recent year figures were available—the U.S. government had issued patents relating to the use of about 20 percent of known human genes, including genes for Alzheimer’s, asthma, colon cancer, and, most famously, breast cancer. This means pharmaceutical companies, scientists, and universities control what research can be done on those genes, and how much resulting therapies and diagnostic tests will cost. And some enforce their patents aggressively: Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation.

Looking beneath the history of one's country is like learning that alcoholism or depression runs in one's family or that suicide has occurred more often than might be usual or, with the advances of medical genetics, discovering that one has inherited the markers of BRCA mutation for breast cancer. You don't ball up in the corner with guilt or shame at these discoveries. You don't if your wise, forbit any mention of them. In fact you do the opposite. You educate yourself.

Myriad Genetics, which holds the patents on the BRCA1 and BRCA2 genes responsible for most cases of hereditary breast and ovarian cancer, charges $3,000 to test for the genes. Myriad has been accused of creating a monopoly, since no one else can offer the test, and researchers can’t develop cheaper tests or new therapies without getting permission from Myriad and paying steep licensing fees. Scientists who’ve gone ahead with research involving the breast-cancer genes without Myriad’s permission have found themselves on the receiving end of cease-and-desist letters and threats of litigation. In May 2009 the American Civil Liberties Union, several breast-cancer survivors, and professional groups representing more than 150,000 scientists sued Myriad Genetics over its breast-cancer gene patents. Among other things, scientists involved in the case claim that the practice of gene patenting has inhibited their research, and they aim to stop it. The presence of so many scientists in the suit, many of them from top institutions, challenges the standard argument that ruling against biological patents would interfere with scientific progress

Looking beneath the history of one’s country is like learning that alcoholism or depression runs in one’s family or that suicide has occurred more often than might be usual or, with the advances in medical genetics, discovering that one has inherited the markers of a BRCA mutation for breast cancer. You don’t ball up in a corner with guilt or shame at these discoveries. You don’t, if you are wise, forbid any mention of them. In fact, you do the opposite. You educate yourself. You talk to people who have been through it and to specialists who have researched it. You learn the consequences and obstacles, the options and treatment. You may pray over it and meditate over it. Then you take precautions to protect yourself and succeeding generations and work to ensure that these things, whatever they are, don’t happen again.

When we go to the doctor, he or she will not begin to treat us without taking our history—and not just our history but that of our parents and grandparents before us. The doctor will not see us until we have filled out many pages on a clipboard that is handed to us upon arrival. The doctor will not hazard a diagnosis until he or she knows the history going back generations. As we fill out the pages of our medical past and our current complaints, what our bodies have been exposed to and what they have survived, it does us no good to pretend that certain ailments have not beset us, to deny the full truths of what brought us to this moment. Few problems have ever been solved by ignoring them. Looking beneath the history of one’s country is like learning that alcoholism or depression runs in one’s family or that suicide has occurred more often than might be usual or, with the advances in medical genetics, discovering that one has inherited the markers of a BRCA mutation for breast cancer. You don’t ball up in a corner with guilt or shame at these discoveries. You don’t, if you are wise, forbid any mention of them. In fact, you do the opposite. You educate yourself. You talk to people who have been through it and to specialists who have researched it. You learn the consequences and obstacles, the options and treatment. You may pray over it and meditate over it. Then you take precautions to protect yourself and succeeding generations and work to ensure that these things, whatever they are, don’t happen again.

Until recently, three unspoken principles have guided the arena of genetic diagnosis and intervention. First, diagnostic tests have largely been restricted to gene variants that are singularly powerful determinants of illness—i.e., highly penetrant mutations, where the likelihood of developing the disease is close to 100 percent (Down syndrome, cystic fibrosis, Tay-Sachs disease). Second, the diseases caused by these mutations have generally involved extraordinary suffering or fundamental incompatibilities with “normal” life. Third, justifiable interventions—the decision to abort a child with Down syndrome, say, or intervene surgically on a woman with a BRCA1 mutation—have been defined through social and medical consensus, and all interventions have been governed by complete freedom of choice. The three sides of the triangle can be envisioned as moral lines that most cultures have been unwilling to transgress. The abortion of an embryo carrying a gene with, say, only a ten percent chance of developing cancer in the future violates the injunction against intervening on low-penetrance mutations. Similarly, a state-mandated medical procedure on a genetically ill person without the subject’s consent (or parental consent in the case of a fetus) crosses the boundaries of freedom and noncoercion. Yet it can hardly escape our attention that these parameters are inherently susceptible to the logic of self-reinforcement. We determine the definition of “extraordinary suffering.” We demarcate the boundaries of “normalcy” versus “abnormalcy.” We make the medical choices to intervene. We determine the nature of “justifiable interventions.” Humans endowed with certain genomes are responsible for defining the criteria to define, intervene on, or even eliminate other humans endowed with other genomes. “Choice,” in short, seems like an illusion devised by genes to propagate the selection of similar genes.

Having a BRCA2 mutation makes you more susceptible to melanoma, for example, so you would need to take extra precautions to protect yourself from harmful sun exposure, including wearing sunblock and sun-protective clothing when outdoors.

BRCA-1, a gene that strongly predisposes humans to breast and ovarian cancer.

genetic workup showed I had a BRCA1 mutation, I chose to undergo chemo and have my breasts removed. (That was an aggressive course of action, and I had no regrets. My

BRCA2 are so-called caretaker genes, cancer-suppressing genes responsible for DNA repair. Mutations in this gene can cause a rare form of hereditary breast cancer. As has been well publicized, Angelina Jolie decided to undergo a preventive double mastectomy. A National Breast Cancer Coalition survey found that the majority of women believe that most breast cancers occur among women with a family history or a genetic predisposition to the disease.141 The reality is that as few as 2.5 percent of breast cancer cases are attributable to breast cancer

appear to help turn BRCA protection back on, removing the methyl straitjacket the tumor tried to place on it.144 The dose breast cancer researchers used to achieve this result in vitro was pretty hefty, though—the equivalent to eating about a cup of soybeans. Soy may also help women with variations of other breast cancer susceptibility genes known as MDM2 and CYP1B1.

in BRCA-1 has a 50 to 80 percent chance of developing breast cancer in her lifetime (the gene also increases the risk for ovarian cancer), about three to five times the normal risk.

My head started spinning, and I again wished I brought someone along to help me write all of this down.

My head started spinning, and I again wished I brought someone along to help me write all of this down. I knew all the facts, all the options, and yet keeping them straight for myself was proving impossible. I clutched my phone harder, desperately wanting to make an SOS call to anyone . . .

Taking all this in was clearly overwhelming to both daughter and father. And toward the end of the conversation, it became rather difficult to explain the principles of chemotherapy in the level of detail I would have wanted had we only more time with patients.

My breast cancer diagnosis was in March, and now it was November. Reflecting back, why did I not get tested when I was first diagnosed? As an expert-patient, why did I not even think about getting tested for a BRCA mutation? The very short answer is that I did not really meet the criteria for testing and the test would have cost several thousand dollars were my insurance to decline to pay for it. The long answer is more complicated. No one recommended it.