Our Bodies, Our Blog

Congress Wants to Give Companies the Right to Own Our Genes

By Guest Contributor |
text: The fight to take back our genes

by Lori Andrews

Six years ago, on June 13, 2013, the U.S. Supreme Court in AMP v. Myriad took a great step forward for women’s health by unanimously ruling that human genes could not be patented. Now a bipartisan group of Senators and Representatives have released a bill that would allow companies to own our genes once again.

Article 1 of the U.S. Constitution provides that any patent system must “promote progress in science and the useful arts.” But patents on genes do not promote the progress of science. In fact, they impede it. Such patents also run afoul of over 150 years’ worth of U.S. Supreme Court holdings in which, as the Court pointed out, “the laws of nature, physical phenomena, and abstract ideas have been held not patentable. Thus, a new mineral discovered in the earth or a new plant found in the wild is not patentable subject matter.”

Patents are supposed to be granted on inventions, not on naturally-occurring substances.  We don’t want someone to be able to patent air and charge us each time we breathe. Yet, by the time the Court heard the Myriad case, companies managed to patent thousands of human genes. They hadn’t “invented” the genes. They’d just found them in nature — in people’s bodies.

Since a patent holder can control any use of its “invention,” gene patent holders used their power to prevent any other doctor or lab from analyzing or doing research on the gene. Prior to the Supreme Court ruling in 2013, Myriad, the company which held breast cancer gene patents, used that power to threaten other labs with multi-million dollar patent infringement suits if they even looked at a woman’s breast cancer gene. That’s how Myriad was able to charge $3000 for a test that could be performed for a fraction of that price. Every woman who wanted her breast cancer gene tested had to send her blood or tumor to Myriad to be tested. Even if another company invented a better test, it couldn’t be used since anyone looking at the breast cancer gene in any way infringed Myriad’s patent. Women who were told they had a mutation in their breast cancer genes had to make a painful decision about whether to have their healthy breasts surgically removed to prevent cancer — but they couldn’t get a second opinion before the operation.

That’s not only bad law and bad ethics, but it’s bad for science and medicine. 

When a non-profit foundation and the American Neurological Association wanted to finance research to find a cure for a particular genetic disease, researchers were unwilling to undertake the work because of the potential for legal action against them by the holder of the patent. SARS research was slowed down because of concerns about the patents on the genetic sequence of the SARS organism. Researchers at Yale, U.C.L.A, and the University of Pennsylvania were forced by gene patent holders to stop their research on various genetic diseases.

One study found that 53% of genetics labs had stopped doing research due to concerns about gene patents. Another found that 49% of American Society of Human Genetics members had to limit their research due to gene patents. Readover, once a biotechnology patent is granted, there is a chill on future research using the patented information, including a statistically significant decline in scientific publications using the patented information.

Gene patents also deterred people from participating in medical research. In a study of potential research participants, 32% said they would be offended by the patenting of products of research with their DNA.  

And think about the costs to the consumer. A person’s whole set of 20,000 genes can now be sequenced for $1000, providing the consumer with information to help her avoid disease or select appropriate treatment. But, when genes were allowed to be patented, the patent royalty was $2000 for just one gene. Who could afford $2,000 times 20,000 — $40,000,000 — in royalties for sequencing their genes?

Stop Congress from commercializing the building blocks of life. Add your voice to that of the ACLU and over 150 other civil rights, medical, scientific, patient advocacy, and women’s health organizations who submitted letters opposing the proposed amendment to Section 101 of the Patent Act.

Lori Andrews is a Distinguished Professor of Law at Chicago-Kent College of Law, Illinois Institute of Technology, and the former chair of the federal advisory committee advising the Human Genome Project on the ethical, legal, and social implications of genetics.  She filed an amicus brief on behalf of medical organizations in AMP v. Myriad.

“Simone de Beauvoir alone would never have gotten me from intellect to action”

By Guest Contributor |

Note from My co-founder Judy Norsigian: After publication of my reflections piece in the June 2019 issue of the American Journal of Public Health (AJPH), I received this wonderful email from Kay Johnson. Her story reminds us all once again of how ONE life experience (reading a book/having a terrific teacher or mentor/participating in an eye-opening social justice action/etc.) can change the course of our lives and bring us into partnership with others also committed to racial, economic and social justice for all.

I am … Read

Refusing to Be Silenced: Federal Gag Rule an Active Threat to All Who Care about HIV

By Guest Contributor |

by Anna Forbes

On April 23, Judge Michael McShane of Federal District Court in Oregon issued a preliminary injunction against a federal “gag rule” written to forbid health care providers from even talking about abortion to patients who have questions about it.

The two parallel suits before him were filed by the American Medical Association, Planned Parenthood of America, and a coalition of over 20 states (along with numerous other plaintiffs) that oppose this gag rule.

Scheduled to go into effect on for May 3, the rule … Read

“A Female Body in this Specific Moment”: Myhags Exhibition

By My |

As the 50th anniversary of the first edition of “Our Bodies, Ourselves” approaches, a New Haven museum has launched an exhibition featuring art inspired and informed by the book.

The exhibition, also titled Myhags, features a variety of media created by read than 70 artists. The works are on display at the Ely Center of Contemporary Art through April 10.

A sack that hangs with the video from “Gestation” Photo: Lucy Gellman

The exhibit includes participatory installations like Megan Shaughnessy’s video work, which … Read

three early teenage girls laughingthree early teenage girls laughing

Gender-Inclusive Puberty and Health Education is Life-Affirming for All

By Guest Contributor |

by Joel Baum and Kim Westheimer

A fifth-grade student walks into their first-ever puberty education class. They look around the room: maybe they feel like everyone else has already developed in ways they haven’t. Maybe they wonder why they already have characteristics a person of their gender isn’t “supposed” to have for a few read years. Or maybe they feel like they just can’t identify with lessons that should be giving them vital information about puberty and health.

Indeed, most puberty education classes omit foundational issues … Read

Cervical Cancer Prevention posterCervical Cancer Prevention poster

Cervical Cancer Prevention: What You Can Do

By Guest Contributor |

by Gary A. Richwald, MD, MPH

January is Cervical Health Awareness Month. Read specifically, January 21-27 is Cervical Cancer Prevention Week, and for good reason: nearly 13,000 women in the United States are diagnosed with cervical cancer each year, and read than 4000 of them will die from it. Luckily, this form of cancer is now largely preventable. Women can take steps to reduce their chances of contracting human papillomavirus (HPV), a widespread virus that can cause pre-cancerous changes in the cervix.

How Does Cervical Cancer … Read

headshot of Dr. Constance Chenheadshot of Dr. Constance Chen

Breast Reconstruction Options: What’s Best for You?

By My |

Some women decide to forego reconstruction and instead “go flat.” Read read->Women with breast cancer who undergo mastectomies often face difficult decisions about breast reconstruction. The first is whether or not to undergo reconstruction; the second, if reconstruction is chosen, is what kind of reconstruction to have?

Learn read about the risks of breast implants and the need for better research ->Breasts can be rebuilt using implants — either saline or silicone — or they can be rebuilt using autologous tissue, which means tissue … Read

A Call for Women Who Experience Pain with Sex and for Health Care Providers Who Treat Them

By Guest Contributor |

by Marta Milkowska

My name is Marta Milkowska and I am a graduate student at the Harvard Kennedy School of Government. I am working on a project aimed to better understand the problem of pain during sex – something experienced by many women. This summer, with support from Myhags and the Harvard Kennedy School’s Women in Public Policy Program, I am seeking interviews with individuals who fall into one of the following three categories:

  • Women ages 16 to 35 who experience pain during … Read

A Message About the Future of Myhags

By My |

Earlier this year, My held a retreat to determine our future. We came to the painful conclusion that we don’t have the resources and infrastructure to continue our main programs using paid staff. Instead we will transition to a volunteer-led 501(c)3 that will mainly advocate for women’s health and social justice. Read

Religion-Restricted Healthcare and its Effects on Reproductive Health Needs

By Guest Contributor |

by Rebekah Rollston

In my last year of medical school, I began looking into residency programs in obstetrics and gynecology. My first interview of the season was at a Catholic-affiliated hospital.

As the daughter of a religion scholar and professor, I was already familiar with the stance of the Catholic Church on reproductive healthcare. I knew that Catholic hospitals follow a set of ethical guidelines that prohibit doctors from providing abortions, contraception, tubal ligations, vasectomies, and infertility services, and that patients seeking these services are generally referred … Read