In Our Genesby Jacqueline Bull June 26, 2018
What do you do with information from the future? Specifically, what do you do with the knowledge that you are at a higher likelihood of cancer? This is the question that Jill Werman Harris is interested in. With the invention of testing for the BRCA gene mutation (having this mutation increases your risks of getting breast and ovarian cancer), people are now faced with difficult information and difficult choices. Jill is primarily a journalist on this topic and also a bioethicist.
“What are you supposed to do with information from the future?” Jill asked, “You don’t know if you’re going to get cancer, you don’t know what kind of cancer you’re going to get, you don’t know the degree of the diagnosis you’re going to get. And so you’re asking people to be aware that they are at risk. And what do you do in the circumstance in which the information is both a ‘knowledge is power,’ but it’s also a burden.”
Certain high risk populations like Ashkenazi Jewish people that are more likely to carry the BRCA mutations than the general population and people with family history of breast and ovarian cancers are opting to determine if they have the gene mutation and assess their lifetime risks.
“A lot of people just don’t know that they have it, so [Basser Center’s] goal is to build a worldwide community and focus on these cancers, not to tell women what to do, but to say ‘Listen, you should know about this,’” she said.
Jill is moderating the panel “Knowledge is Power: Understanding and Managing BRCA-Related Cancer Risk,” put on by the Basser Center for BRCA right here in San Diego at the Lawrence Family JCC on July 17. The panel brings together specialists to discuss what is happening in medicine and science working with BRCA mutations. The panel includes Susan M. Domchek, a Basser Professor in Oncology; Dr. David Smotrich, founder and medical director of La Jolla IVF; Dr. Paul Hyde, a surgeon that performs procedures related to breast cancer; Dr. Lisa Madlensky, Director of the Family Cancer Genetics Program at Moores UCSD Cancer Center; and Sarah Abelsohn, a local San Diegan and BRCA mutation carrier.
“We look at it as a joining of hands, you know, for the community of people who are dealing with such perplexing issues – we look for a sense of community, a sense of partnership, knowledge, education. Our resource fair will really show them that San Diego, has many resources available for people who are going through this tough time and all of the medical decision making that comes along with it,” Jill said of the panel.
The decision making is chiefly intense surveillance or undergoing surgery of some kind. And part of the panel and these experts’ goal is to educate and help people in that position.
Now that it is easier to get information about your DNA, sometimes people are left to interpret this potentially frightening data on their own. “There is a big debate going on right now because there are all kinds of at home tests like 23andMe that don’t require you to have genetic counseling for this test,” she said.
These DNA kits deliver their results in a packet of information and having to interpret the information alone can leave people with fear and without a complete picture and context of their risks. Jill explained there are stories from women having had these tests and undergoing surgery to prevent a risk that they didn’t have. Being more educated and knowledgeable can also clarify which tests/genes you may not even meet the criteria to be tested for.
This is where genetic counselors come in and also where having support groups and knowledgeable professionals come in.
“It’s deeply personal. There is no way to know what women will do with this information, so you don’t know what the future holds. We can’t predict the future. And so we just try to guide women with the best information that you have at the time,” she said.
Navigating the concept of risk over one’s entire life and considering all of the other factors that would make one at a greater or lesser likelihood of getting cancer is one of the reasons it is so difficult to make one size fits all recommendations.
“Also remember it is a lifetime risk, if you are a 20 year old girl, it is not like they are going to get cancer tomorrow. It is a lifetime risk. And so there are many other factors, it is not a guarantee you’re going to get cancer,” she said.
“It’s a big head trip so to speak. Basically Basser – their goal is to make better choices for women. Their mission is to see a world free of the devastating effects of BRCA related cancers and provide a road map for curing all genetic diseases. The choices are so awful for these women – your breasts or your ovaries or live in fear. Talk about a rock and a hard place,” she said.
As a journalist and bioethicist, Jill foresees genetic testing becoming more common and expects that how well the BRCA community (both patients and physicians) approach this adversity will be informative for other genetically linked cancers.
“This is a template for all kinds of genetic cancers as genetic medicine becomes part of everyday medicine, how BRCA people will handle it. They are kind of like the pioneers of how to handle things in the future.”