The Supreme Court ruling passed down today, which stated Myriad Genetics can not own the human gene, does not mean they are the bad guys.The high court ruled that genes naturally found in the body cannot be patented, but that synthetically created genetic material, called complementary or cDNA, can be patented. Patents enable inventors to prevent others from making, using or selling a novel device or process they’ve created.
While Myriad said the ruling will preserve its revenue from the test, other experts said it will open the door for competing tests and for scientists to do gene-related disease research without restraints.
But what about the human side of this case?
Actress, Christina Applegate was diagnosed with breast cancer in 2008 at the age of 36. Applegate—who tested positive for the BRCA-1 gene mutation and whose mother is a repeat breast cancer survivor—said she chose mastectomy to reduce the chance that the cancer could spread or come back. Applegate later founded Right Action for Women, a nonprofit that provides financial aid to women at high risk of breast cancer. If it not were for the genetic testing promoted by a company such as Myriad Genetics, Applegate’s cancer might have gone undetected.
I am lucky to be one of them. My mother is also a breast cancer survivor. I underwent genetic testing and learned I have a mutation in the BRCA 1 gene, making me more susceptible to breast and ovarian cancer, Christina Applegate states on her website, Rightactionforwomen.org.
Right Action for Women provides aid to individuals who are at increased risk for breast cancer and do not have insurance or the financial flexibility to cover the high costs associated with breast screenings. To make the Right Action for Women program a reality, Christina partnered with the Cancer Support Community to bring together thought-leaders in the field of genetics, oncology, psychology, nutrition, legal aid, advocacy and patient financial assistance to lend their expertise and advice on online education, financial assistance and advocacy. This group became Right Action for Women’s Advisory Council. So Myriad Genetics can’t be all that bad can they?
Myriad Genetics has been in the news lately–with actress Angelina Jolie brining the subject of genetic testing to the forefront in an essay published Tuesday in the New York Times, Jolie wrote about opting for an elective, preventive double mastectomy and breast reconstruction after learning she carries the faulty BRCA1 gene, which greatly increases the risk of breast and ovarian cancer. That inherited mutation, she wrote, gave her an 87% chance of contracting breast cancer, and a 50% chance of contracting ovarian cancer.
Jolie, 37, a mother of six pre-teen children whose own mother died of cancer at age 56, clearly made the right decision for herself and her family.
Many people hurled insults at Jolie for inadvertently waving her pocket-book at the many people in the country who are not able to undergo such costly preventative treatment. Even if women can get the tests, many will be unable to take action. Unlike Jolie, most people do not live in a world where cost, even to save one’s life, is no object, says Robin Abcarian of the LA Times in her article “Angelina Jolie can afford to save her own life; many women can’t.”
Myriad Genetics, the company at the center of a Supreme Court decision saying human genes cannot be patented, sank Thursday after initially gaining after the ruling. The decision was considered a victory for cancer patients and other genetic companies since the field for research is left open for all to pursue.
But the Supreme Court’s move was also decidedly negative for Myriad, as it “seems pretty clear that other people will be able to offer DNA testing for breast and ovarian cancer genes, which is central to their (Myriad’s) business,” says Charles Rothfeld, an attorney with Mayer Brown.
The bad guy here is not Myriad Genetics–it’s accessing the funds to undergo these test. It’s up to our society to find a reasonable solution that will allow for the companies who invent things to still reap a profit while helping to save human lives. We should highlight celebrities like Christina Applegate, who are not only talking about helping save lives (Angelina, this is directed at you), but actually doing something about it. Kuddos to Christina.
Other notable women who have been diagnosed with breast cancer:
Cynthia Nixon (diagnosed 2006 at 40):
“I didn’t want paparazzi at the hospital, that kind of thing,” Nixon told the New York Daily News after treating her cancer with a lumpectomy and radiation.
Sheryl Crow (diagnosed 2006 at 44)
“I am a walking advertisement for early detection,” Sheryl Crow said in October 2006 about catching suspicious calcifications in both of her breasts on a routine mammogram.
Edie Falco (diagnosed 2003 at 40)
She says she chose to stay mum because she didn’t want any fuss or pity. “It was very important for me to keep my diagnosis under the radar…because well-meaning people would have driven me crazy asking, ‘How are you feeling?’” Falco . Instead, she “bucked up, put on my Carmela fingernails, and was ready to work.”
Kylie Minogue (diagnosed 2005 at 36)
“Just because someone is in a white coat and using big medical instruments doesn’t necessarily mean they’re right,” she told Ellen DeGeneres in 2007.
Elizabeth Edwards (diagnosed 2004 at 55)
After chemotherapy, surgery and radiation, Edwards appeared at first to be cancer-free. But in 2007, doctors discovered the cancer had spread to one of her ribs, hip bones, and lungs. She lost her battle with cancer in 2010, at the age of 61.
Robin Roberts (diagnosed 2007 at 46)
“I did a self breast exam and found something that women everywhere fear: I found a lump,” she said in a message posted online the day of her surgery. Roberts completed eight chemotherapy treatments, followed by radiation. In 2012, she underwent a bone marrow transplant for MDS, or myelodysplastic syndrome.
Jaclyn Smith (diagnosed 2002 at 56)
In 2002, the fashion and home furnishings entrepreneur and host of the Bravo show Shear Geniusdiscovered a lump in one of her breasts during a routine checkup. She had a lumpectomy and radiation, and later became active with groups such as Susan G. Komen for the Cure. Smith also speaks publicly about the recognizing breast cancer risk factors as part of the Strength in Knowing program.
Diahann Carroll (diagnosed 1998 at 63)
Carroll (who in 1968 became the first African-American actress to star in her own television series,Julia had no family history of the disease and was caught by surprise. She underwent a lumpectomy and 36 radiation treatments and then went on the road to urge more postmenopausal women to get tested. In 2008 she released the tell-all book, The Legs Are the Last to Go: Aging, Acting, Marrying Other Things I Learned the Hard Way.