TMC PULSE

t m c » p u l s e | m ay 2 0 1 7 11 Project, chose to have information related to Alzheimer's omitted when his genome was sequenced. "Since we can't do much about Alzheimer's disease, I didn't want to know if I was at risk," Watson said when he was presented with a copy of his genome at Baylor in 2007. "My grand- mother … died of Alzheimer's at the age of 84. So I had a one in four chance of sharing the wrong form of that gene." Watson did not want to spend his later years wondering whether every forgetful moment was a sign of the disease emerging. Watson did discover a BRCA1 muta- tion and shared that his sister had been diagnosed with breast cancer at age 50. Concerns about discrimination also deter some from undergoing genetic testing. The Genetic Information Nondiscrimination Act (GINA) protects individuals from discrimina- tion in health insurance and employ- ment based on their personal genetic information. Certain aspects of the Affordable Care Act (ACA) also protect from such discrimination—measures related to pre-existing conditions, for example. GINA and the ACA are far from comprehensive, however, when it comes to genetic discrimination. A bill currently under consider- ation, H.R. 1313, would essentially allow employers to require employees to share genetic information as part of workplace wellness programs. Those who do not comply could be charged more for health insurance. The bill has already passed a committee vote and is expected to be included in the ACA replacement. Both Calabria and Bossenberger said their insurance covered and continues to cover a large portion of the expenses associated with having a BRCA mutation. The uncertain future of the ACA, however, has many concerned that a pre-existing condition may soon, once again, become a liabil- ity when seeking health coverage. Another major concern surrounds children. When someone tests positive for a BRCA mutation, part of the subse- quent meeting with a genetic counselor includes discussing who in the fam- ily is at risk and how to disclose that information, Nangia said. When at-risk family members are underage children, however, the situation becomes more complex. BRCA1 and BRCA2 mutations are autosomal dominant mutations, meaning you only need one mutated gene to be affected. If you have the mutation, your children have a 50 per- cent chance of having it, too. Though children of BRCA mutation carriers have a high probability of also having the mutation, many experts, including the American Academy of Pediatrics (AAP), believe that children should not be tested for mutations related to adult-onset diseases. Instead, parents should wait until children are adults and can make their own deci- sions about testing. According to the AAP, if it's a condition that's not going to manifest in childhood, you should wait, McGuire said. "You should preserve what's called their right to 'an open future.'" This means parents should pro- tect children from having import- ant life choices decided for them. Bossenberger, who does not yet have children, has nonetheless given some thought to the type of guidance she would offer. "I would leave it up to them," she said. "If I had a girl, I would maybe emphasize it more, suggest testing would be a good idea. But I think I would present it similarly to how my parents did." It's a difficult conversation that is many years in the future, which brings Bossenberger hope through all the testing, scanning, watching, waiting— and worrying. "Hopefully by the time my kid is grown up we'll have so many more advancements in treating or detecting breast cancer that they won't have to worry as much as I do," she said. There's an intrinsic risk in just having a BRCA mutation, but not all BRCAs are the same. — JULIE RANI NANGIA, M.D. Director of the Breast Cancer Prevention and High Risk Clinic at Baylor College of Medicine T H E PA R K LA N E L uxury Apartments www.Theparklane.com Corporate Units Avaliable For 3 Month+ Leases Medical Stays Visiting Academic and Medical Professionals On Site Dog Park Shuttle to all Major Hospitals in the Texas Medical Center Electric Vehicle Charging Stations On-Site Storage Included Assigned Garage Parking No Water or Garbage Bills 24hr. Valet & Concierge Service Pets Accepted Minutes from Texas Medical Center Sophisticated Surveillance System Discount to Texas Medical Center Employees NEW! 1701 Hermann Dr. I 713.526.VIEW Both furnished and unfurnished corporate units available!

• Cover