Inside Story America

Should human genes be patented?

As Angelina Jolie underwent a preventive double mastectomy, we look at the controversy surrounding genetic testing.

Hollywood actress Angelina Jolie shocked many this week when she announced that she had undergone a double mastectomy to reduce her chances of getting breast cancer.

There's awareness but it's created a lot of fear ... Getting breast cancer is not dying from breast cancer. Most women survive and live their normal life, having dealt with breast cancer and moving on from that. And that's in the absence of having bilateral mastectomies.

by Dr. Kathy Helzlsouer, a medical oncologist and director of the Prevention and Research Center at Mercy Medical Center

Her bold decision to go public with the news has received wide praise. Many believe that such discussion of women’s health will have a beneficial impact on our awareness of issues often left unspoken.

But there has also been concern from some women’s health care specialists, who fear that the revelation could inspire a wave of similar requests, for what is an incredibly painful, drastic and, in the majority of cases, unnecessary operation.

Jolie’s announcement has also brought attention to the increasing corporatisation of breast cancer treatment in the US.

Of particular concern is that the genes that mutated in Jolie have been patented by the company, Myriad Genetics, something that critics say keeps the costs of treatment prohibitively high for millions of women. The patent is being challenged at the US Supreme Court.

The genetic mutations that Jolie has are very rare and the link between the genes and cancer risk is not fully understood:

Fewer than 1 percent of women in the US are thought to have BRCA gene mutations. BRCA gene mutations are thought to cause only about 5 to 10 percent of breast cancers and about 15 percent of ovarian cancers.

But women with the genes have up to an 87 percent lifetime risk of developing breast cancer, and an up to 54 percent chance of developing ovarian cancer.

Because Myriad Genetics, has a monopoly on BRCA testing, it determines the cost, which is about $3,000.

Insurance companies will only cover testing if patients are at a high enough risk for breast cancer right now, only about 2 percent of women meet that criteria. And Myriad Genetics sets its own threshold for assistance – single patients must earn less than $23,000 a year to qualify.

Angelina Jolie's story is not an every woman story ... she has access to the best health care in the world presumably and she was able to afford the genetic test .... The average woman vastly overestimates her individual risk of breast cancer ... All surgery involves risks ... We must really evaluate the risks and benefits in an unbiased way.

by Karuna Jaggar, the executive director of Breast Cancer Action

Myriad Genetics issued the following statement defending its patent ahead of the Supreme Court’s ruling:

“The diagnostic tools based on the company’s patents have been used by more than one million women. In its brief with the Supreme Court, Myriad said that without adequate intellectual property protection, companies would face significant obstacles conducting pioneering research and bringing new products to market that save lives.”

Myriad also defended the cost of testing, saying:

“More than 95 percent of patients in the US have access to BRAC analysis [a genetic test that confirms the presence of a BRCA gene mutation] through private insurance or other coverage. The average out-of-pocket expense for patients is $100. The company also offers a financial assistance programme that provides reduced charge or free testing to low-income, uninsured women. More than 5,000 women have received free testing from Myriad during the past three years.”

So should our genetic material be patented? And could Jolie’s revelation lead to public health risks if it is not carefully discussed?

Inside Story Americas, with presenter Shihab Rattansi, is joined by guests: Sandra Park, an attorney with American Civil Liberties Union’s Women’s Rights Project and one of the lead attorneys challenging gene patents in the Supreme Court; Karuna Jaggar, the executive director of Breast Cancer Action, an advocacy group working to end the breast cancer epidemic; and Kathy Helzlsouer, a medical oncologist and director of the Prevention and Research Center at Mercy Medical Center. Myriad Genetics, the company who has patented the BRCA gene, declined to appear on the programme.