Angelina Jolie’s Genetically Modified Body

 

May 16, 2013
 

 

How do you feel about Angelina Jolie's decision? On Monday, The New York Times published her opinion piece called, "My Medical Choice." Angelina, the popular 37-year-old actress, chose to have a double mastectomy. After three months of medical procedures to remove her breasts and perform reconstructive surgery with implants, she wrote about her prophylactic decision.

Angelina does not have cancer. She discovered through genetic testing that she has a mutation of the BRCA gene, giving her a "65 percent risk of getting [breast cancer], on average." Her doctors further told her that she had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. After removing her breasts, she says her risk of breast cancer is only 5%. Ms. Jolie wants other women to have themselves tested and to know that "if they have a high risk they, too, will know that they have strong options."

Who paid for Angelina's testing, mastectomy and reconstructive surgery? Her health insurer or her personal bank account? Will other women really have her options? In the new era of government- and HMO-prescribed treatment protocols, restricted by Obamacare's "essential health benefits" and decisions issued by Obama's Independent Payment Advisory Board (IPAB), what will the options be? Will health insurers or government pay for it just because a woman wants it? Unlikely.

That's not the end of important questions. Women must consider the costs - up to $3,000 just for the test - and the significant risks of testing and surgery. Risks can include anxiety from the test results, a lifetime of living with the knowledge, family reactions to learning about their own familial genetic risks, and complications and altered body image from the surgery. With breast removal, self-esteem and personal relationships can be at risk. And sometimes breast reconstruction doesn't go well.

Less than 1 percent of women have a BRCA mutation. About 50.8% of the 313 million Americans today are female. Using 1 percent for ease of calculation, less than 1.6 million girls/women could have a BRCA mutation. However, as reported by the National Cancer Institute, "not every woman who has a harmful BRCA1 or BRCA2 mutation will develop breast and/or ovarian cancer."  Then again, some women without these mutations will get breast cancer.

What does this mean for the future? Affordable genomic sequencing of one's entire DNA is coming. Once a person's genetic results are in, what body parts could individuals choose to remove or replace for prevention purposes? Or what might an insurer or the government want removed to reduce health care costs? Will you have a right to say no to the procedure? If you refuse, could coverage be denied if you get the "preventable" condition?

Angelina made a calculated decision, acting on fear understandably generated by the early death of her mother from breast cancer. Her story is interesting, but the issue of genetic testing and radical prevention strategies is so much more complex than she reveals. We would do well to step carefully and cautiously into this new genetically modifiable world.

Partnering with you for freedom,

Twila Brase, R.N., PHN
President and Co-founder