Is Genetic Testing Right For You?

Kimberly Field-Springer, PhD

Assistant Professor

Department of Communication Studies

Recently Angelina Jolie, actress, director, writer, winner of an Academy Award, and 3 Golden Globes, shared her personal medical decisions about genetic testing for a breast cancer gene, BRCA1, mutation in an op-ed piece published by The New York Times. Jolie, known for playing fierce roles, including the vigilante, Lara Croft in Tomb Raider and CIA operative, Evelyn Salt in Salt, opened about her risks of developing breast and ovarian cancer. Jolie’s mother died of cancer at the age of 56. And when Jolie’s children asked her what happened to “Mommy’s, mommy,” Jolie had difficulty talking about the disease that took her mom’s life.¹ These conversations led the nation to discuss decisions we make based from the role of genetic testing in identifying breast and ovarian cancer risk factors, diagnosis, and treatment options.

But is genetic testing right for everyone? First and foremost, genetic testing is a personal choice; therefore, there is no clear answer to this question. Yet, we tend to under- and over-estimate our susceptibility to certain risks. We live in a risk society where we are constantly bombarded with new information suggesting that we can calculate risks about the possibility of developing certain diseases. Some of us who are at high risk may decide not to undergo genetic testing for fear of receiving undesirable results. Others of us may decide to undergo genetic testing precipitated by fear that is unwarranted. When we receive results from genetic testing, we then must make sense of this information. Yet, in reality, the decision to act on this information introduces new risks into our situation that affects us personally as well as our close loved ones. And we tend to take for granted the psychological, physiological, and emotional aspects of the information we receive about risks.

So, what do we know about the BRCA1 (breast cancer susceptibility gene 1) and BRCA2 (breast cancer susceptibility gene 2) genetic testing for mutations? How is this information linked to our risk of cancer? A woman or man is at high risk for developing cancer if she or he inherits a harmful mutation of either gene. The gene mutation affects women and men differently. According to Kate Shane-Carson, MS, Certified Genetic Counselor, Assistant Professor, Clinical Internal Medicine at The Ohio State University Division of Human Genetics, “In the general population, women have about a 10-12% lifetime risk to develop breast cancer and a 1.5% lifetime risk to develop ovarian cancer. However, women with a BRCA1 or BRCA2 mutation have a 50-85% lifetime risk to develop breast cancer. Women with a BRCA1 mutation have a 40-60% lifetime risk to develop ovarian cancer, and women with a BRCA2 mutation have a 10-20% lifetime risk to develop ovarian cancer. In the general population, men have less than a 1% lifetime risk to develop breast cancer. Men with a BRCA1 mutation have about a 1% lifetime risk to develop breast cancer, and men with a BRCA2 mutation have about a 5-10% lifetime risk to develop breast cancer. Men also have an increased risk to develop prostate cancer with a BRCA1 or BRCA2 gene mutation. The BRCA2 gene has also been associated with an increased risk for pancreatic, throat, stomach, and melanoma skin cancer.” Studies conducted to understand the association of these gene mutations linked to cancer has most often only been investigated in families with past histories of cancer.² We have an abundant amount of information about the association between gene mutation and risk of cancer. However, there is limited research that examines psychological and emotion risks associated with genetic testing.

Genetic testing is a blood sample that investigates any alterations in proteins associated with the mutation. The results of this test can take several weeks to obtain. The cost of the test can range up into the thousands of dollars and may or may not be covered by health insurance. Prior to scheduling a genetic test, it is suggested that one seeks advice from a genetic counselor for a risk assessment and psychological outcomes resulting from positive or negative test results. Results of genetic testing can lead to depression, anxiety, and/or anger. Positive results may cause one to undergo preventive surgeries with the possibility of lifelong complications. Negative results may cause one to feel survivor’s guilt associated with knowing that one is at low risk for developing cancer. According to Kate Shane-Carson, “It is also important to note that if a mutation has not been previously identified in the family, and a person has a negative BRCA1/BRCA2 test result, they and their family members may still be considered at an increased risk for cancer based on their personal and family history, due to other genetic and environmental factors for which we cannot test for or have a good understanding of at this time. In these cases, it is important for patients to talk with their genetic counselors and physicians for a complete evaluation of their personal and family history to see if increased screening and possible consideration of preventive surgery is still indicated.” The social and psychological effects of genetic testing may involve family tensions and an increase in individual surveillance of the self (e.g., issues of confidentiality of genetic testing and individual responsibility for screening).³

Because of the limited amount of information about how we individually cope with the results of genetic testing, there are some issues that we should take into consideration. First, you may want to investigate your own individual risk factors. In Jolie’s case, her family medical history motivated her to schedule a genetic test. Second, you should try to learn as much as you can about genetic testing and how you may respond to positive or negative outcomes. Third, talk to an expert or genetic counselor if you decide to move forward and make sure to discuss any concerns or questions you may have about genetic testing. Finally, you should understand that the decision to act upon results is a personal choice. For Jolie her calculated risk for developing breast cancer was 87 percent based upon a genetic test of the BRCA1 gene. Jolie was a high risk candidate for developing breast cancer and her decision to undergo a prophylactic double mastectomy was a personal choice. There are several options for positive test results that range from low risk referred to as surveillance measures (e.g., screenings) to high risk referred to as prophylactic measures (e.g., surgery). Whatever personal decision you make involves physiological, psychological, social, financial, and emotional, sometimes unintended, effects for both an individual and their family that should be considered when acting upon risk information.

For more information about genetic testing, you can visit the OSU Clinical Cancer Genetics website at http://cancer.osu.edu/patientsandvisitors/cancerinfo/prevention/cancergenetics/pages/index.aspx?ref=go and/or Family HealthLink at https://familyhealthlink.osumc.edu/Notice.aspx.

¹ Jolie, A. (2013 May, 14). My medical choice. The New York Times, p. A25.

² National Cancer Institute. (2009). BRCA1 and BRCA2: Cancer risk and genetic testing [Fact Sheet]. Retrieved from http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

³ National Cancer Institute. (2009). BRCA1 and BRCA2: Cancer risk and genetic testing [Fact Sheet]. Retrieved from http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

The Role of the Lived Body in Social Activism

Dr. Kimberly Field-Springer, Assistant Professor of Communication Studies, and her colleague, Dr. Anna Wiederhold, recently published an article in The Journal of Gender Studies, titled: "Embodying imperfect unity: womanhood and synchronicity in antiwar protest." 

The authors explore "the power and constraints of gendered bodies in political activism through a rhetorical analysis of the Lysistrata Project, a global theatrical act of dissent against preemptive war in Iraq."

Click here to read the full article.

MLB + PEDs = A Major League Problem

by Dariela Rodriguez, Ph.D.

“This is important.  You must care.  You need to stop enabling the cheaters the way we used to.  You have to root, root, root just as hard for the game itself as you do for the players.”  ESPN’s Steve Wulf’s words to the fans of Major League Baseball (MLB) are a plea for fans to keep fighting for a cleaner sport, a return to the integrity that was once a part of the sport.  Yes professional baseball has had it’s share of scandal in the past, the 1919 World Series fix by members of the Chicago White Sox and the Pete Rose gambling controversy, however baseball has never seen the problems that steroids and other performance enhancing drugs, or PEDs, present to the sport.  What makes this problem so dangerous for the MLB is the scope of the problem.  The current PED scandal involving Tony Bosch and the Biogenesis of America includes, at the current number, 19 MLB players and 1 minor league player.  According to the Mitchell Report in 2007, some 62 MLB players were have found to have purchased PEDs in the past, showing that this is clearly a problem that is not showing improvement even though MLB authorities are working to punish players for their attempts to cheat.  The issue is not just that players are using PEDs, this is clearly a problem in many sports beyond baseball, but more so for the fact that there does not seem to be a consequence sufficient to serve as a deterrent.  So the question needs to be asked…why are so many players willing to sacrifice an opportunity to play professional sports by using PEDs?

Before we address the question of why, we can probably answer the question of how are so many able to get away with using PEDs to gain an advantage long enough to make is worth the risk.  Wulf’s words were intended as a rallying call for fans to not lose focus and become complacent with the constant scandals that seem to be becoming the norm in baseball.  His words can be seen to make sure fans become as outraged as fans were after the 1919 World Series scandal, a call for them to be more concerned about the problems that these drugs are causing for the sport of baseball and not just for their team’s season.  But when it comes to a comparison, we are not in 1919 anymore.  During the World Series scandal, scandal was not common in professional sports, nor did it involve multiple players from multiple teams.  It was easy to be outraged because scandal was rare, this is no longer the case.  Today we turn on the television and it is almost more surprising to not see athletes linked to drugs, crime, or general misbehaviors.  If fans are getting complacent to these issues, it is not a lack of love for the sport, it might be so we can continue to tolerate watching sports.  It might be so fans can still, in good conscious pay high ticket prices to pay the salaries of these athletes that are essentially stealing from them.

Baseball was always seen as the All-American sport.  Despite the diversity that is present in the clubhouse, the saying still goes, there is nothing more American than baseball and apple pie.  So what does it say about American sports if so many players are cheating and getting away with millions in the process?  In the past, cheaters in baseball were banned from the sport for life, taking away to privilege to make a living by playing a game.  That is still what many sports still do.  Look at Lance Armstrong or Marion Jones.  Armstrong is no longer allowed to compete in cycling, armature or professionally.  Jones was stripped of her Olympic medals and her records and had to turn to basketball to attempt a profession sports comeback.  So why is baseball backing down on the life-time bans that it was willing to hand down in the past?  Is it the money that these players bring to the teams that makes many of the management look the other way when it comes to testing? Major League Baseball seems to want to make the efforts to fix the problem, but without the help of the team management, this is not possible.  And in many cases, such as Melky Cabrera, Alex Rodriguez, and Roger Clemens, the teams are not shying away from signing players known to have used PEDs in the past. 

Most recently, it seems like the MLB and the teams were working to together to properly punish players found to have used PEDs in order to show that there are consequences for breaking the rules.  For example, Melky Cabrera was suspended by the MLB for 50 games during the 2012 season for using PEDs and, upon being reinstated after serving his suspension, the San Francisco Giants did not add him to their playoff roster as they advanced to the World Series.  With this suspension, it seemed like the MLB, and the Giants, were doing the right things by punishing a player for drug use.  However, the awarding of Cabrera with a World Series ring after the Giants won did seem like a step back.  He did not help his team get to the playoffs as he was suspended, nor was he playing to win them the title, but he was rewarded with a championship anyway.  Now Cabrera is again collecting millions as a member of the Toronto Blue Jays, and is also linked once again to PEDs in the Bosch scandal.  Under the MLBPA agreement, Cabrera can be suspended for 100 games, essentially a season long suspension, if he is found guilty in the Bosch affair, but he could still play and get paid the next season.  So now the question shifts to why not use PEDs if it gives you the chance to become a millionaire in the process? 

If the MLB and the teams do not come together to fix this problem, they might as well come together and allow for PED use in baseball.  Players see it as a way to make it to the big leagues and make the big-time money they have dreamed of, and without the risk of having to give up the game they love.  Without the risk of losing their opportunity to play, and therefore the opportunity to make a living at the sport, more and more professional athletes are starting to look at PEDs as just another means to an end.  If serious consequences are not handed down, the league risks losing integrity and so with it they risk jeopardizing the integrity of the sport. Wulf’s words to the fans need to be directed to the powers that be as well, “root, root, root just as hard for the game itself,” because in the end, that is the true victim.  

Professor Co-Authors Book

Dan O'Rourke, Associate Professor Communication Studies, has co-authored a book with his son, Morgan Bostdorff O'Rourke. A Good Town Speaking Well is a history of the Wooster High School Speech and Debate team. For over one hundred years the Wooster forensic team has excelled in local, state, and national competition. Wooster High School has qualified students to the National Forensic League championship tournament 63 times, more than any public or private high school in the nation. This is a story of the students, coaches, teachers, parents, and community that supported this unique co-curricular activity. The co-authors interviewed former members of the team dating back to the 1940s as well as conducting archival research in National Forensic League records, Ohio High School Speech archives, and the Wayne County Genealogical Library.

A launch party will be held at the Wooster Book Company, 205 West Liberty Street, Wooster, Ohio 44691 on Saturday, July 27, 2013 at 2:00 P.M.  Through a special arrangement with The Wooster Book Company, www.woosterbook.com, twenty percent of the proceeds of this book will be donated to the Wooster High School speech and debate team.