Case Study 5: The Disenfranchised DR. GENEROSA GRANA As these tests are making it into the public arena, it is going to become difficult in terms of how they're introduced to the inner city communities and minority populations. For the African-American community, genetics and heredity have been very painful experiences. They have been discriminated against on the basis of heredity, and there is a long track record of discrimination that really influences their decision now to participate or not participate in genetic testing. GENEROSA GRANA Hi, Margaret. How are you? MARGARET How are you, Dr. Grana? GENEROSA GRANA Good. How was the recovery? MARGARET Just fine. GENEROSA GRANA I do miss the wig, though. I really miss that exotic wig. MARGARET Well, I'm glad you liked it, but a little bit of my own hair is better than the best wig. GENEROSA GRANA It looks beautiful. MARGARET Thank you. GENEROSA GRANA We shouldn't be misguided in thinking that we are going to reach all groups in our population equally. We haven't been able to do that in the past, and I think we will have problems with this as well. GENEROSA GRANA Any pain back here? GENEROSA GRANA Although for example, breast cancer incidence is lower among minorities than it is among Caucasian women, the mortality of minority women from breast cancer is high, primarily because they tend to present with a more advanced stage of disease. The ability to do genetic testing allows us to give them a much more specific assessment of risk and to make recommendations based on that. GENEROSA GRANA And it is recommended that once you have had breast cancer, that we're more aggressive about... GENEROSA GRANA This community has really provided a lot of challenges for us in an attempt to get this information across. GENEROSA GRANA Linda, tomorrow, you and Kim were going to go out into the community in one of your usual outreach sessions, and what we need to make sure is that you have all of the materials in place and answer any questions that may come up. LINDA JOHNSON Right. We have a route schedule. We're going to take the Route 400 bus. We're going to get out here in front of the hospital, we're going to get on the bus, we have some literature outlined, we're going to take it all the way over to Philadelphia, across the bridge. There were just a few things I wasn't sure if we wanted to touch base on. We're going to give them information on the screening program, but we wanted to make sure we gave them some information on genetics or counseling and some of the other things. What do you think? GENEROSA GRANA I think that's really important. As we bring the message of cancer prevention, now we need to start integrating the message of genetics, and the idea of prevention. LINDA JOHNSON Patty gave me the name of a woman we're going to contact tomorrow who is, through the screening project. She's high risk, I think her mom had breast cancer, she has a sister that's kind of resistant and we're going to go meet her. We told her we just wanted to give her some information and I'm kind of going as a survivor to let her know it's not all bad news. So we'll see how that works out. GENEROSA GRANA That's a necessary message out there. LINDA JOHNSON Yes, it is. LINDA JOHNSON Oh, this is just like... Now let's tell them... LINDA JOHNSON When I first started working with Dr. Generosa Grana, I came to the Cancer Center of Southern New Jersey. I primarily go out and identify women that either had a family history of breast cancer or themselves were diagnosed with breast cancer. I could kind of refer them to Dr. Generosa Grana's program and say, you know, it's just education, you might be interested in participating. The greatest issues in bringing African-American or minority women in general into genetic testing or research is breaking down the barriers of past history. LINDA JOHNSON This is a program that we have at Cooper Hospital through the YWCA. Have you had a mammogram this year? WOMAN ON BUS Yes. LINDA JOHNSON There's been a history of us being tested on, used as quote, guinea pigs. That's the feeling we have. It's not a death sentence and we want to get the word out to the African-American and Hispanic population that it is... So we all know that history and that's usually the first thing that comes up when you start talking about genetic testing or research. You're a man over 50, we're also talking to a lot of men, it's not us, it'll be men, about prostate cancer and why it's important. It's killing a lot of African-American men, breast cancer's killing a lot of African-American women. KIM HADDON Ring the bell. FREDA JOHNSON Hello, how are you? KIM HADDON Hi Freda. This is Miss Johnson. FREDA JOHNSON How you doing, Miss Johnson? KIM HADDON I'm Kim Haddon from the YWCA Encore Plus program. LINDA JOHNSON I'm Linda Johnson from Cooper Hospital. FREDA JOHNSON This is my sister Cheri. CHERI Hi, nice to meet you. LINDA JOHNSON This is Kim Haddon, and Kim works with us, she's with the Encore Plus program at the YWCA and she works with me doing community outreach. I knew a little bit about the facts of breast cancer history in your family, and we're doing a program, it's a focus group that deals with genetic testing and counseling. But part of the program initially starts with education. We feel that if women or family members get to know a lot about genetics and some of the genetic ties with breast cancer, because most breast cancers are not hereditary, so I don't want you to think that you're at such super high risk that you probably have a higher probability. FREDA JOHNSON My name is Freda Johnson. I'm single, never been married. I have one daughter, three year old, Jasmine. I work 8 to 4 in a day program. Earliest memory is when I was seven, my grandmother died from cancer, and I remember asking my mother about cancer, and it was like, shh, hush-hush. That word, you know, cancer. Then my next memory was when I was sixteen, my mother had cancer. FREDA JOHNSON We didn't find out she was going in the hospital before that week. CHERI I think that was more to protect us, to keep us from not worrying about it. FREDA JOHNSON You were young, too. CHERI Right, and then too, like you were saying, the word cancer has always been hush-hush, so she didn't want to hear, she didn't want us to react to the word. LINDA JOHNSON Right. I know a lot of people have the taboo about bad blood. We have so many negatives about us anyway... FREDA JOHNSON Kim and Linda came over, and we talked about mammograms and genetic testing and you know, breast exam. We talked a lot about cancer, and my sister Cheri happened to be here, and she was like, don't want to hear about it. And I think, well, she probably wanted to get up and leave, really, but she stayed during the whole meeting and listened, even though she really didn't want to be here. CHERI I'm not interested in the research because some of the things I've heard about the research, they tried certain things out on African-American people and I don't like what I've heard. They try different medicines out on us and I don't agree with that. LINDA JOHNSON Well, actually I'll probably have to defer that to Dr. Grana. Maybe she can address some of the things that have changed, because she's actually involved in this research project, and she knows some of the history and some of our concerns too. CHERI I'm still not interested in... Freda, she goes around and she does a lot and finds out information and I get my information from her sometimes. LINDA JOHNSON Oh, so you actually feel more comfortable getting your information from a family member? CHERI Yes. LINDA JOHNSON Freda, what about you? Would you be willing to come and join us in the focus group? FREDA JOHNSON Who's going to be there? LINDA JOHNSON There'll be a Dr. Jenny Grana, she's a doctor of oncology, which is a cancer doctor... FREDA JOHNSON The meeting was very interesting about the genetic testing, which sounds very interesting. I'd really like to learn more about it because of my daughter Jasmine, you know. I would like to know her risk. FREDA JOHNSON Hi, I have an appointment for a mammogram, my name's Freda Johnson. NURSE/ATTENDANT I'm going to bring this down on your shoulder... . FREDA JOHNSON Since talking to Linda Johnson, I had a mammogram, I did more self examination every month, and sometimes more than once a month, keep a check on myself. NURSE/ATTENDANT I'd like you to hold your breath for me please. FREDA JOHNSON It makes me more hopeful just learning about the genetic testing and the information that I have, I would like to know more, and I want to know more about it because of my daughter's future. But I haven't been tested. I'm interested in getting tested. NURSE/ATTENDANT OK... GENEROSA GRANA Although two individuals may start on the process of genetic testing for the same reasons, once the genetic test result information is available, how those two individuals will deal with that information is very different. If you take an affluent individual who has no concerns about discrimination in terms of employment, health insurance, life insurance or disability insurance and who has access to all of the screening strategies that are available, including prophylactic mastectomy or prophylactic ovarectomy, many of the barriers to undergoing testing are already taken away. JASMINE I can't... FREDA JOHNSON I know, you had that in the wall... What are you looking at? GENEROSA GRANA On the other hand, if you have an individual of limited financial resources who then decides to have genetic testing, what will they be able to do with those results? Will they be able to have the same choices as an affluent individual in terms of preventive health strategies? Well they have the same access to surgery, mammography? I don't think so, and that's very much going to affect the choice to have testing or not have testing. FREDA JOHNSON Do you want to sing Twinkle, Twinkle? JASMINE Yeah. FREDA JOHNSON OK. Twinkle, Twinkle, little star, (etc.)... FREDA JOHNSON I think it's different when a person doesn't have much money as far as testing and you think about it, but you're kind of skeptical in a way, because you don't really have that much money, or can afford to, when someone who does have the money, they just go ahead... FREDA JOHNSON I see a giraffe. TEXT SCROLL Despite several years of aggressive outreach, fewer than sixty African Americans have joined the Camden study. Most cite fear that their DNA will be misused. In addition, Medicaid has yet to reimburse for genetic testing, private insurance rarely covers it, and confidentiality is lost when it does. Still, African Americans have higher rates of diseases like diabetes, heart disease and cancer for which testing might prove most useful. Continue to Testing Family Bonds.