Women Gambling With Genetics Due To Financial Constraints

geneticsMelinda carries the gene mutation known as BRCA1, which increases her risk for breast, ovarian, prostate and pancreatic cancer. After having chemotherapy and a double mastectomy at the age of 29, she told Norah O’Donnell, CBS News’ Chief White House Correspondent that she didn’t want to pass on this potentially deadly mutation to her future children.

“It’s a lifetime of having to worry about it,” she said during the 60 Minutes segment. “And I just didn’t want my kids to have to do that.”

Melinda is just one of many women who are deciding whether or not to go through pre-implantation genetic screening (PGS), also known as “embryo screening” and subsequently, in vitro fertilization (IVF) in order to have a child free of their genetic mutations. While it may seem like a no-brainer situation, there are many factors women have to consider during this process.

Gene mutations come in many forms. Some are more life threatening such as Huntington’s Disease, Tay Sachs and Cystic Fibrosis. Others called hereditary cancer syndromes such as breast cancer and ovarian cancer syndrome, also known as BRCA1 and BRCA2, Familial adenomatous polyposis and Lynch Syndrome are usually adult on-set and do not guarantee that the person will develop cancer. However, the gene mutation puts them at a higher risk than the general population.

Eleanor Griffith, MS, CGC, a certified genetic counselor at Myriad Genetics, Inc. said women who are aware of their genetic conditions and do not want to pass them on to their offspring have two options. The first involves prenatal testing during pregnancy to determine if the fetus has your gene mutation. If the gene mutation is detected, Griffith said the choice to terminate the pregnancy is ultimately up to the woman and can sometimes be a difficult choice under such stressful and emotional circumstances.

“You’re terminating a pregnancy for a condition that’s adult on-set and who knows what could happen,” she said. “You could have a child that dies in a car accident at 35, so it becomes more of an ethical issue for some people.”

The other option, she described, is through PGS and IVF where the eggs are retrieved, fertilized in a dish, biopsied for a cell and then that cell is tested for your mutation. This process identifies the embryos that are affected and unaffected and eventually, only the unaffected embryos are implanted.

While many women may rather do the PGS and IVF option, it is the more expensive one. Dr. Fred Licciardi, Professor, OBGYN and Infertility Specialist at the NYU Langone Fertility Center said very few insurance companies would cover these procedures. The PGS test costs around $6,000 and the IVF process costs anywhere from $15,000 to $20,000.

Because of these circumstances, Dr. Licciardi said most of the patients he’s seen are more affluent, but he is hopeful that the price will eventually fall.

“If more people can get access to the procedure, if more insurance companies cover it, I am sure that the price will come down,” he said. “Technology will help as there will be more inexpensive ways to do the process.”

Even with the high cost, Dr. Licciardi said the demand for PGS testing has been exponentially increasing in recent years.

“In this day and age people are technology minded,” he said. “Testing is not for everyone, but for some people, they see something new like this and they see it as a benefit.”

He added that one of the main drivers for the increase is that people are happy with the results.

“We know it works,” he said. “We are not talking our patients into it, but we can confidentially tell them that this is something that could really help them.”

For Melinda, the process worked. She has two children who are mutation free, but the question may not be whether a woman should consider this option, but if she can.

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Melanie Breault

Melanie Breault is a freelance writer and graduate student in New York City. She is obtaining her master's degree in Urban Affairs from Hunter College focusing on women's economic development and living in Brooklyn with her Shepherd mix, Clarkson.