My name is Kevin Holcombe. I'm the Chair of Obstetrics and Gynecology here at Long Island Jewish Medical Center and North Shore University Hospital. So genetic testing is a process by which we can sequence the genes that you have. Genetic testing isn't invasive. you can do genetic testing on any material. it's most commonly done with blood, but, you can use saliva, hair, skin, pretty much anything. So it can be as invasive as a blood draw, and as non-invasive as a cheek swab. Our understanding of the genetic component to ovarian cancer has grown over the years. With one blood draw, or with one cheek swab, you can get far more information now than you could in the past.

You should think of genetic testing as something that you may need to revisit from time to time to make sure that you've had the most up-to-date testing. Genetic testing is particularly important for Black women when it comes to ovarian cancer for a number of reasons. First is, we don't have a good screen for ovarian cancer, so most women who get epithelial ovarian cancer, which is the most common type, at an advanced stage, where the chances of recurrence and death are much higher. Genetic testing gives you a chance of finding out that you may be at risk for an ovarian cancer, and reducing your risk through either risk-reducing surgeries or maybe medical treatments that help you to avoid developing ovarian cancer in the first place.

But when you look at outcomes in this country, Black women die at higher rates from ovarian cancer, stage for stage, compared to White women.

And so for the Black community, it's that much more important to prevent this disease than to wait to try to treat it. There are barriers to genetic testing, and s- some of it is cost, but that barrier is coming down. When genetic testing first came around, it cost about three thousand dollars just to do one gene sequence. the new technology allows you to sequence seventy, eighty genes for maybe two hundred and fifty dollars. So even that two hundred and fifty dollars can be prohibitive for some, some women, but it's becoming less so. What I find is, a persistent problem is just a lack of knowledge, a lack of awareness, about the need for genetic testing in the Black community, a lack of sharing information of family history, a lack of awareness among doctors that taking a full genetic history could open up an opportunity for them to help a patient.

So I think there's a lot of education that's required, and that's why I'm so happy to be here for this program. And I would lo- want to make everyone aware of the ability to get free genetic testing through the Ovarian Cancer Research Alliance, and you can find that on their website at ocrahope.org. I can understand a person's concern about privacy when it comes to genetic testing. Obviously, your genetic material is the most intimate information that you have, and, we would want to make sure that it's well-protected. The companies that do genetic testing are all set up to protect your genetic information in the same way hospitals do, but there are legal protections as well.

For example, insurance companies can't use your genetic, history against you to deny coverage. These, protections are all afforded under the HIPAA Act. And so while I understand the concern about, privacy, with all the potential life-saving benefit of the knowledge that can be gained from genetic testing, I think it far outweighs the theoretical risk. Families can be empowered by genetic testing, by identifying more people in the family who may be potentially at risk, and yet they find out that they actually don't carry that gene. So I think the people who test positive are empowered with the ability to pursue risk reduction, and the people who test negative are given the relief of knowing that, despite their family history, they personally are not at risk.

Black women have higher chances of dying of ovarian cancer, stage for stage, compared to White women. A Black woman may have lower chance of survival compared to a White counterpart within the same institution. It does not appear, with ovarian cancer, that this is due to biology. studies where we've controlled how patients are treated, where everyone gets the same access, for example, on clinical trials, we see that these disparities go away, and you get equal outcome when you get equal treatment. I think in the story of ovarian cancer is a lack of dissemination and access for the discoveries that we found to be effective in treating this disease.

Once someone finds out that they're at increased risk because they've been diagnosed with a mutation, for example, it opens up a host of possible in- interventions that can decrease their chance of either developing the cancer at all or dying of it.

For example, with breast cancer, that's a disease that has effective screens. There's mammograms, there's MRIs, and you may choose to do some enhanced screening to increase the chances of picking up a cancer at a low stage and increasing your chance of survival. But you also might decide to have a prophylactic, a preventative surgery, for example, a, a removal of both breasts, a bilateral mastectomy. And with today's reconstructive techniques, with plastic surgery, you can have a host of options regarding reconstruction. Either one of those pathways can lead to a significant decrease in your chance of dying of that cancer.

But then you have other cancers, like ovarian cancer, where there is no effective screen. We can't just image you and figure out who's going to develop a cancer. And in those cases, prophylactic surgery, removal of the tubes and ovaries, has consistently shown to significantly decrease the chance of developing the cancer or the chance of dying of that disease. We have to balance that decision, what age to offer somebody that surgery, be- based on the side effects of premature menopause. And so, for example, with BRCA mutation carriers, we recommend someone get, consider strongly removing their tubes and ovaries by the age of thirty-five to forty, or at the time they're complete childbearing.

But other mutations may have a later onset, for example, BRCA2, where you can delay that prophylactic surgery and do it safer at forty to forty-five years of age, based on the fact that those mutations lead to later onset.

And I should also mention there are medical treatments, something as simple as an oral contraceptive pill. So once you know, you've got a host of options that you can choose from, and a doctor should be able to sit down and help you decide which risk-reducing strategy works best for you. I think it's really important that families are aware of their cancer history, and that can only effectively occur when we share information among family members. It's been my experience in, in my clinical practice where patients come to me, and they think that they don't share cancer information in their family because of their ethnic background.

Asian patients will say, "We don't discuss this in my culture," or African American patients will tell me the same thing, without realizing that most families don't openly discuss cancer history. And that leads to an incomplete family history when you have a doctor who's trying to get the information to potentially decide who needs to be tested. So I think it's really important that if you have a personal history of cancer, it can be difficult to talk about it, but I think it's, your family should know, and that information should be shared, and, particularly if there's a genetic mutation that is, found, that that information should be disseminated in families.

We recognize that can be a difficult conversation, and so there is something called cascade testing. In some, institutions, you can have the doctor take the responsibility of contacting your family members.

They don't have to mention who asked to reach out to you, but they just let you know someone in your family has a cancer, who has a genetic mutation, and they offer you the ability to do genetic testing. And it's innovative ideas like that, cascade testing, that are gonna help us, magnify the, the protective impact of genetic testing of any one individual. The importance of a family cancer history really needs to be shared among family members, and I've had the clinical experience in my own practice. I don't think a lot of patients realize that. I think that the more your family is aware of the family cancer history, the more power they have to be able to share that information with their doctor.

And so I would say, if you have a cancer, it's a difficult conversation if you've been tested positive for a deleterious mutation, but it's one that carries a lot of weight, and you can protect a lot of people in your family by sharing this information.