On June 13, 2013, in the case of the Association for Molecular Pathology v. Myriad Genetics, the United States Supreme Court ruled, in a unanimous decision, that genes cannot be patented. The news was both a shock and a relief to Ellen T. Matloff, M.S., who started Yale’s Cancer Genetic Counseling Program in 1995. For 14 years Matloff had argued that something occurring in nature should not merit patent protection and that the patents were harming patients and medical researchers. When the American Civil Liberties Union filed a suit against Myriad Genetics, which held patents on the BRCA1 and BRCA2 genes that are linked to breast and ovarian cancers, Matloff joined the case as a plaintiff. Two weeks after the Supreme Court decision, Matloff spoke with Yale Medicine.
How did you get into a profession that didn’t exist when you were born?
I first learned about the field of genetic counseling when I was a sophomore at Union College, taking a course in genetics. I enjoyed the course so much that I did an internship at Albany Medical School. At that time, cancer genetics was not an option because the field hadn’t even cracked open yet. My first job out of graduate school was doing pediatric and adult genetics at SUNY Upstate Medical Center in New York. It was then, in 1995, that significant discoveries began being made in cancer genetics.
What has changed since you started?
When the genetic counseling program was started in 1995 by Vincent DeVita, who was director of Yale Cancer Center, I was everything. I was the secretary; I scheduled appointments. They gave me a supply closet that they had emptied out for my office. Now we have two secretaries, a phlebotomist, and six and a half genetic counselors, and we are still growing.
In 1995, BRCA1 and BRCA2 hadn’t been cloned, so we didn’t have genetic testing for that condition. Patients would come in, we’d take their family history, and determine, based on that history, if it looked hereditary. If it did, we would make estimates of their risk to develop cancer. I’d been at Yale for about three months when BRCA testing became available and the phones were ringing off the hook. With BRCA1 and BRCA2, genetic testing really became available to the masses.
With her decision to go public on her double mastectomy, has Angelina Jolie done a service to the cause of genetic counseling?
For a movie star whose living is based on her body and her looks, as well as her talent, to put this out there was a really brave thing to do. Since the story broke, our referral rate has increased by 40 percent. A lot of people have asked me if Angelina Jolie made the right choice. This is a very individual decision. It varies based on the person, the family history, and personal preferences. Do I think Angelina Jolie made a reasonable decision? Absolutely. She’s reduced her risks tremendously. She’s reduced her worry.
How did you get involved in the Myriad case?
I’d been very outspoken about the danger of gene patenting since the late 1990s. I had written many editorials to prestigious medical journals and they told me my letter was so preposterous they weren’t even going to send it out for review. I couldn’t get anyone to take it seriously. Someone suggested I contact a very well-known bioethicist, Arthur Caplan, and see if I could get him interested in becoming a co-author. Lo and behold, he was interested. Because of his reputation, we landed the cover of a prestigious bioethics medical journal. Later on, when the ACLU decided to sue and was looking for plaintiffs, I got a phone call.
Why shouldn’t genes be patented?
First of all, patents are supposed to be protection for innovation. The human gene is nothing that was discovered by Myriad Genetics. There was nothing new invented. Second, we can now see what kind of damage can be done to patients and researchers if a company holds the patent to the letter of the law. When BRCA1 and BRCA2 were first discovered, there were many labs across the country that were offering testing. We were offering testing here at Yale for $1,600. Over time the cost of genetic testing has gone down, down, down, yet the cost of BRCA testing went up, up, up. Before the patent was overturned, the cost of BRCA testing was $4,000.
Where were you when you heard the Supreme Court decision?
The decision came on my daughter’s last day in preschool, and I went for the parent sing-along. It was pouring rain. We ran from preschool to the car and were soaking wet. It was then that I heard my cell phone going crazy. I had a million text messages, and they all said the same thing: unanimous decision by the Supreme Court banning gene patents. I started crying. I was shocked and relieved and overwhelmed. For me this had been a 14-year battle. To have it go all the way to the Supreme Court and to have it be a unanimous decision were just overwhelming. My 3-year-old daughter was alarmed that mommy was crying. I said, “We won today. These are happy tears.”