Transcript Index
Search This Index
Go X

0:00 - Segment 00b: Interview Identifier

Play segment Segment link

Partial Transcript: "This is Tacey Ann Rosolowski, PhD, and I am sitting in the department of genetics with Dr. Louise Strong. This is our second interview session. Today is August 10th and the time is about 10:10. Thank you for giving me this time for this second session. "

Segment Synopsis:

Keywords:

Subjects:

0:22 - Segment 08: Creating a Cancer Screening Program

Play segment Segment link

Partial Transcript: "We ended up last time with you talking about the screening program for the Li-Fraumeni patients, and I was wondering if you would tell me a bit more about the screening program as you visualize it and as you would like to see it implemented."

Segment Synopsis: In a follow up to Segment 7, Dr. Strong goes into greater detail about plans to create a Screening Program for Li-Fraumeni patients at MD Anderson. She explains that in the past, screening programs were not established because there was little that clinics could offer patients if cancers or predispositions were discovered.

Keywords:

Subjects: A: Definitions, Explanations, Translations A: Overview B: Building the Institution C: Cancer and Disease C: Discovery and Success C: Patients C: Professional Practice C: The Professional at Work D: Business of Research D: Fiscal Realities in Healthcare D: The History of Health Care, Patient Care D: Understanding Cancer, the History of Science, Cancer Research

16:41 - Segment 09: An Ongoing Survivorship Study and Related Research

Play segment Segment link

Partial Transcript: "Well, thank you for that overview. Now I’d like to ask you about something that is certainly very related, which is the number of studies that you’ve been doing on the inter-relationships of different childhood cancers and, as I was going through the literature I was—literature meaning your background—on your research history—I was noticing several phrases that were used for the types of studies you were doing and one is the mutational model for childhood cancer, and I was wondering if you could explain to me what that was and how that evolved into a study of survivorship."

Segment Synopsis: Dr. Strong’s Mutational Model for Childhood Cancer is a study of survivorship ongoing since the 1970s. Dr. Strong first explains this study’s relationship to her first work, with Dr. Alfred G. Knudson (at MD Anderson), on the “two-hit” model for cancer predisposition. She has incorporated the perspective that any existing genetic mutations creating a cancer predisposition will also be influenced by “mutogenic events,” such as chemotherapy and radiation therapy, as well as environmental factors such as cigarette smoking and UV exposure.

Keywords:

Subjects: A: Definitions, Explanations, Translations A: Overview A: The Researcher C: Cancer and Disease C: Discovery and Success C: Patients C: Professional Practice C: The Professional at Work D: The History of Health Care, Patient Care D: Understanding Cancer, the History of Science, Cancer Research D: Women and Diverse Populations

35:21 - Segment 10: Establishing a Clinical Cancer Genetics Program

Play segment Segment link

Partial Transcript: "I wanted to ask you also about the clinical cancer genetics program which got established in the 1990s, and if you could tell me how that came about and what it’s involved in right now."

Segment Synopsis: In this segment, Dr. Srong explain that, since her discovery of the role of the p53 gene in creating cancer risk, Dr. Strong has advocated that MD Anderson set up a genetic counseling service and support. The desire to have a clinical genetics program predated the discovery of BRCA, and Dr. Strong explains this history near the end of this segment.

Keywords:

Subjects: A: The Administrator B: Building/Transforming the Institution B: Critical Perspectives on MD Anderson B: Institutional Processes B: MD Anderson History C: Cancer and Disease C: Offering Care, Compassion, Help C: Patients C: Professional Practice C: The Professional at Work D: The History of Health Care, Patient Care D: Understanding Cancer, the History of Science, Cancer Research

70:18 - Segment 11: A Philosophy of Genetic Information and Its Integration into MD Anderson

Play segment Segment link

Partial Transcript: "Wow, that’s really neat. I wanted to ask you about how your discoveries in this area and your work—I mean like the p53 gene, the working with survivors, working with these models that give you all this information about patients creates this very wide range of ethical dilemmas. We’ve talked about it, but I’m wondering, there’s this—I’m not even quite sure the question I want to ask—because you’ve kind of gone through the process with struggling, like, “How do we deal with this?” It just seems like such dramatic information suddenly to hold about individuals, and then you have, how do doctors make decisions based on this information? How do legislators make decisions? How do individuals make decisions? "

Segment Synopsis: In this segment, Dr. Strong discusses several issues that emerge as genetic information is available to patients and to institutions. Though individuals still believe that “they are their genetic information,” Dr. Strong believes that eventually genetic information will be less stigmatizing and regarded as equivalent to other kinds of medical information. She believes this will take some time, but surveys show that most individuals respond positively when asked to join gene sequencing studies. They want their information to be shared, which she sees as a positive sign. In the medical community, she explains that there are still gaps between genetics and departments that are unaware of the importance of genetic information. She explains that there is a generational factor –how much genetics one had as part of medical training, and how much contact a clinician or researcher has to a geneticist as part of a team.

Keywords:

Subjects: A: Definitions, Explanations, Translations A: Overview A: Professional Values, Ethics, Purpose C: Cancer and Disease D: Cultural/Social Influences D: Ethics

82:24 - Segment 12: The First Woman Faculty Member with an Endowed Chair

Play segment Segment link

Partial Transcript: "Yeah, that’s really interesting. I’d like to shift gears a little bit and talk a little bit about some of your administrative experience if that’s okay. We’ve kind of brought research to a close for a moment. If that’s okay with you? One of the things that I have in my notes is that in 1981 you became the first woman faculty member to have an endowed professorship."

Segment Synopsis: Dr. Strong explains the factors that led her to become the first female faculty member at MD Anderson with an endowed chair (1981), eventually named the Sue and Radcliffe Killam Chair. She explains that ideas of genetics in cancer were new. She also traces the roles she played on the national stage, adding to her reputation. In 1975, when she was asked to give a talk at the National Cancer Advisory Group and then invited to be part of the NCI Data Evaluation Human Risk Assessment Project (’76 – ’80), she took on responsibility for preparing reports on the dangers of toxins. She then was on the Board for Epidemiology, part of the Board of Scientific Counselors, then on served on the National Cancer Advisory Board. She also notes that the Killams, who endowed the chair, were family friends, though she explains that she does not know if they were aware how their funds were being directed.

Keywords:

Subjects: A: Activities Outside Institution A: Career and Accomplishments A: Personal Background A: Professional Path B: Diversity Issues B: Gender, Race, Ethnicity, Religion B: Philanthropy, Fundraising, Donations, Volunteers

94:18 - Segment 13: Growth and MD Anderson’s Presidents

Play segment Segment link

Partial Transcript: "But it kind of goes to another issue I was going to ask you about, which is really the Texas connection. That you’re from a long-time Texas family and this is a Texas institution and now you have kind of a Texas chair. It’s sort of a nice story, and I was wondering just about your impressions of that—about sort of how that might deepen your connections with the state. Then, on the flip side, what does it mean for Texas to have an institution such as MD Anderson?"

Segment Synopsis: are that a few visionaries purchased some swampland and built a cancer center that is a huge benefit to Texas and known all over the world. She also briefly notes that her grandfather was the first pediatrician in Texas, when pediatrics was a very new specialty. She then lists several downsides of MD Anderson’s growth and restructuring as a corporation. She notes the expansion of administration, a non-money making sector of the institution, though she notes that the attitudes toward patients continues to be outstanding. She would like to see better communication between the administration and faculty, and tags hierarchies as the main impediment to any free flow.

Keywords:

Subjects: B: Critical Perspectives on MD Anderson B: Growth and/or Change B: Institutional Change B: MD Anderson History B: Obstacles, Challenges C: Portraits

0:00

 ROSOLOWSKI:

0:00:03

This is Tacey Ann Rosolowski, PhD, and I am sitting in the department of genetics with Dr. Louise Strong. This is our second interview session. Today is August 10th and the time is about 10:10. Thank you for giving me this time for this second session.

ROSOLOWSKI:

0:00:03.6 +

We ended up last time with you talking about the screening program for the Li-Fraumeni patients, and I was wondering if you would tell me a bit more about the screening program as you visualize it and as you would like to see it implemented.

STRONG:

0:00:44

Sure, I’d be glad to. One of the frustrating things about Li-Fraumeni syndrome had been that you could offer testing and identify individuals who carried these genetic mutations but then we had very little to offer them in terms of early detection or prevention, so a lot of people would choose not to have that information since there wasn’t any action medically that would be useful, and it was particularly frustrating when you were talking about children because there are some very lethal tumors that can occur in children, and we generally did not test children because the kind of guidelines in genetics have always been that you don’t test children unless there’s something you can do to treat or relieve or prevent the downstream consequences because you want to allow them to have the right to decide for themselves when they’re older, unless there’s an actionable item while they’re young, and then it’s perfectly appropriate for parents to make that decision.

ROSOLOWSKI:

0:01:56

Was that an MD Anderson policy or a general—?

STRONG:

0:01:57

No this was a general genetics consensus almost internationally and not just about cancer, but about genetic diseases in general. It’s just been a consensus since there was any kind of genetic testing that could be offered—sort of a genetics ethics guideline. Now about a year ago there was a study published from Canada in which a rather intense screening program was developed and it was offered to families that carried these p53 germ line mutations and some chose to participate and some chose not to, and then after a period of five or six years they looked at the outcomes of those who had had this taken—the screening—and those who had not, and in both cases new cancers had occurred. In those who had not had screening basically everyone had died, and in those who had undergone screening no one had died. It was a small study—a short follow-up. It was Canada. Some of the tumors in the screened group were tumors that might never have become aggressive, life-threatening tumors, so it clearly needs more follow up and information, but it was the first example of significant comprehensive screening that made any difference. Now a couple of other groups have initiated such screening, and we’re talking about it here as well. Some of the issues have to do with, is this now the new standard of care until proven otherwise—in which case then patients just get charged for the services, or should this be a protocol or a clinical trial where we’re asking the question, “Does this make a difference?” We know not everybody is going to participate just because basically not everyone chooses to do that so we would have a comparison group, or should it be a clinical trial where we randomize people there are lots of different kinds of choices, but right now, because of the cost of the exams and the limited funding available it’s being set up as just a—as if it were standard of care, even though we don’t really know that, and it’s intense. The Canada test was every three to four months. It was what’s called rapid whole-body MRI, plus brain MRI, plus a series of blood studies and breast MRI and ultrasound if there was some other particular indication. So this is pretty intense.

ROSOLOWSKI:

0:05:35.3

And this is every three or four months?

STRONG:

0:05:35

Yes, from age one until—basically and presumably for the rest of your life. So there are lots of concerns about that. With screening we always know we can find things that aren’t really important or life-threatening. There is always the issue of what do you do when you find something abnormal. How far do you pursue it? How many extra biopsies or surgeries or other treatments do you end up doing? How much additional anxiety—all those issue with screening, and when you’re doing total body screening like this there are definitely going to be more of those, and there will be additional costs because of that in addition to all the MRI, et cetera, costs. On the other hand, in the few places that have done it in the US, there has been pretty good response from insurance after educating them with respect to the cancer risk and the cost of the cancer treatment.

ROSOLOWSKI:

0:06:43

You mentioned the Utah?

STRONG:

0:06:45.0

Utah, uh-hunh (affirmative). University of Michigan I think has offered it. There is opening a study at the National Cancer Institute that is a research study. This week I know they had only examined two individuals, but for them it was at no cost, and they even paid your transportation to go to Bethesda and stay there for a couple of days and all that. I think that’s the ideal way to do it, but that would require a lot of funding around the country as opposed to just funding at the NCI. At any rate, I think we’re exploring this. We have some unique research MRI technology here at MD Anderson that I hope can be utilized because it’s even more—gives you better visualization than the current standard of practice.

ROSOLOWSKI:

0:07:49

What is that technology?

STRONG:

0:07:53.1

I can’t really tell you. I’m only told by those who are—I don’t know how they refine it, how that differs from what’s being done as standard, but I’m told that they can do a much better job than what has been done in the published paper to date. At any rate, this is just something I think is very important to get out there to the patients who carry this—families who carry these mutations—and to make sure that they’re aware of it so that they can make the most informed decisions for themselves, for their children, for their relatives to be sure that everyone has the best, most current information possible and that we offer them the best clinical options for reducing not only cancer risk, but death from cancer risk and, importantly, that we reduce their exposure to the cancer-causing therapies that are otherwise used to treat cancer—the chemotherapy and radiation, which have the long-term effects of increasing cancer risk, and they don’t need anything to be added to their burden of cancer risk down the line. So I think that’s one of the most important programs that I hope to see implemented within the next year or so.

ROSOLOWSKI:

0:09:23

Is there—can you outline to me the implementation plan that you’ve been discussing?

STRONG:

0:09:31.3

At present the biggest issue is money. How are we going to pay for it? There is actually—I mean to get into tedious details—there is no CPT code, which is the code recognized by insurance, for rapid whole-body MRI, and there is a code that is sort of MRI, not otherwise specified that has been used, which, with a lot of education of insurance companies, is sometimes covered, but there is no guarantee, and companies, of course, vary. So that makes it difficult to think of doing it as standard of care where you’re then hoping that insurance, or Medicare, or Medicaid, or CHIP programs will fund it. If you don’t have a way to fund it through patient care then you need large amounts of money and, I think we had mentioned before that, for example our Texas CPRIT program starts out with cancer prevention in the wording is only at present funding prevention screening in cases where it is standard of care where it is breast, GI, cervix—I believe those are the only three—and for populations that do not otherwise have access—have not had access to screening. We have not been able to get them interested in funding something like this.

ROSOLOWSKI:

0:11:10.1

Can I ask you—you mentioned educating the insurance companies. How would one go about doing that?

STRONG:

0:11:16

Traditionally we frequently have to write letters of medical necessity to an insurance company. Li-Fraumeni syndrome isn’t even recognized by most clinicians—even those in cancer. If you then go several steps further back in terms of education you’re dealing with insurance companies, and this is just not on everybody’s front page. The hope is that if you educate them to the risk of cancer, the cost of cancer if it isn’t detected early, the lifetime risks that they would be better informed to make a decision about whether it’s in their best interest to pay for these screening studies. So that’s all I know.

ROSOLOWSKI:

0:12:05

I just was curious about how you would go about that process.

STRONG:

0:12:10.3

I think that we’ve all written letters of medical necessity just to pay for genetic testing. Now some companies have guidelines. Some still just look at it on a case by case basis. But I think it is a long-term education, and it’s more than just writing a letter. I think it’s talking to them. It’s giving them a bigger picture of what the difference can make in paying for the screening now as opposed to the cost later, and I think that’s more than just writing a single letter. I think if the opportunity is there talking to someone face to face, or on the phone, or something directly as opposed to writing a piece of paper, sending a letter is the way to go.

ROSOLOWSKI:

0:13:09

Is there anything else you wanted to say about the screening program as you envision it?

STRONG:

0:13:15.2

I think we have to be honest that a program as intense as the Canada program may be difficult to maintain. People get burnout from doing lots and lots of screening when nothing shows up. There are especially risks with respect to the very young children where you might have to anesthetize them to do an MRI, and I think some of these things would just have to be played out—have to see what works and what doesn’t, and that’s why I think it would be much more important to have it set up from the beginning as a clinical protocol where several institutions all agree to either do the same thing or have stated differences so that we get enough data at the end of the day to see what works and what doesn’t. Otherwise I’m afraid we’d just get kind of a mix of things—that each institution ends up going along with what the patients will tolerate, and we don’t get as complete answers as we would if it were a trial.

ROSOLOWSKI:

0:14:34

Are you talking to any other institutions at this point?

STRONG:

0:14:37.3

Oh yes, we’ve got actually an international consortium and we have conference calls every couple of months and we learn what each other are doing but, as I mentioned, in most places it’s being done where patients are required to pay for it, and it’s not being done as a standard trial.

ROSOLOWSKI:

0:15:00.3

What are the other institutions involved in this informal consortium?

STRONG:

0:15:05

Well, we mentioned Utah and University of Michigan. Dana-Farber in Boston and Stanford, City of Hope out in California. I think Texas Children’s Hospital, Baylor nearby is—I don’t know that they’re part of the overall—of the consortium, but they’ve always had a very active genetics program and they’re starting to offer this. I’m sure there are a number of others that I am not thinking of off the top of my head, but it’s a number of those who have had genetic testing program—Penn—Penn would be another—I’m trying to think. I can’t remember if there’s anyone from Hopkins, but places that have had major cancer genetics programs are apt to at least be following this if not actively offering these options. You have to have the imaging people who are willing to do it because rapid whole-body MRI is not something that’s—as I said, there’s no CPT code for it, so this is not something that is traditionally offered for routine evaluations, but if we’re going to have to screen the whole body we have to figure out a way to do it that doesn’t take a week to do each body part.

ROSOLOWSKI:

0:16:43

Well, thank you for that overview. Now I’d like to ask you about something that is certainly very related, which is the number of studies that you’ve been doing on the inter-relationships of different childhood cancers and, as I was going through the literature I was—literature meaning your background—on your research history—I was noticing several phrases that were used for the types of studies you were doing and one is the mutational model for childhood cancer, and I was wondering if you could explain to me what that was and how that evolved into a study of survivorship.

STRONG:

0:17:30

It started out as we discussed, the two-hit model, working with Al Knudson at the beginning, and the question of how generalizable was that? Besides the notion of the two hits and that’s how you could account for the hereditary versus sporadic cancers when at the end point the cancer looked very much the same but some people were getting it much earlier and were getting it because of an inherited predisposition and others were just getting it sort of randomly. So that was one aspect of the model, that it actually could account for how those things happened, but it also raised the question of if these are mutations, and if some individuals already carry a predisposing mutation, then mutagenic events—exposures—would be much more hazardous or likely to cause cancer in that group that was predisposed, and that was certainly documented in looking at the effects, for example, of radiation and probably chemotherapy in the group that started out with a heritable predisposition and that would include—the best documented examples would be hereditary retinoblastoma, in which there’s quite a high risk of another cancer over time, and particularly in those who had radiation, and our Li-Fraumeni syndrome patients. It’s not as well documented for other syndromes, but those are the syndromes that I’ve mostly worked on, so it may be a question of how much it has been looked for elsewhere, but it raises the concerns not only about cancer treatment, but even about screening. CT scans are widely used both in follow-up of patients who have had a cancer to look for evidence of recurrence and widely used in cancer and other kinds of screening, and it may be that there are some individuals for whom that’s really not such a good idea.

ROSOLOWSKI:

0:19:45.0

Are there other—what’s the array of, as you refer to them, mutagenic events—in other words, putting these individuals in some kind of environmental situation that would trigger perhaps something?

STRONG:

0:20:04

Cigarette smoking. You look at the Li-Fraumeni and the retinoblastoma patients and those who smoke have a higher risk of lung cancer than those who don’t smoke. I mean, not surprising, but their lung cancers occur at earlier ages and so forth. UV exposure. Melanoma is a cancer risk in both of those groups and, again, you see risk factors for sun exposure. We have one family with heritable retinoblastoma who have a subset of the family that’s in Australia, and they virtually all have melanomas as well as the retinoblastoma. We don’t have a really great knowledge of what causes most random cancers, and we don’t have an ability to document everything that happens to people, but those are just examples that document the model that those with a genetic predisposition are at greater risk. They’re at risk for the same kinds of carcinogens that we know of in the general population, but they’re just at higher risk of the exposures leading to a new cancer.

ROSOLOWSKI:

0:21:27

Tell me how this study evolved. So it began, really, in the 1970s, when you first started working with Dr. Knudson, and then how, as you moved into being a full-time faculty person here at MD Anderson and continued in your role in the department of genetics—I mean how did you expand this study? How did it—because this is also the study that was very heavily supported by the NIH. Isn’t that correct?

STRONG:

0:21:58.2

Right, right, right. Well, a couple of things. First of all childhood cancers were becoming much more successfully treated and it became obvious we were going to have more survivors, and so I had several sort of different interests in that group. Number one was this question of risk for second cancers. Was it going to be much higher in the subgroup who started out with a genetic predisposition? Number two, in the past retinoblastoma was really almost the only childhood cancer where we had had a large number of survivors of a heritable subgroup, and we knew that they could transmit the gene in a very predictable way. Once we had survivors of Wilms’ tumor, and childhood sarcomas, and childhood brain tumors, and you name it for other childhood cancers were we going to see similar patterns of people that we didn’t know carried a genetic predisposition who would now be having children who would develop the same cancer? It turns out that the genetic subgroup is not nearly as large for most of those other childhood cancers as it is for retinoblastoma, so the risk of just a childhood cancer survivor having a child with cancer is not very high, but there are a few markers such as bilateral tumors and multiple primary tumors in the survivor themselves that help to identify those who do carry a heritable predisposition and who may be at highest risk for having a child with cancer. So this model has played out for many of the childhood cancers in that way. We have also seen that childhood cancer survivors were generally—to become survivors—most often treated with radiation and chemotherapy, and young age at exposure is another risk factor—independent of whether you had a genetic predisposition. Overall, there’s an increased risk. Even if you’re not one of the more rare genetic predisposed children there is, again, a high risk of second cancers, and we’re still, to some extent, trying to assess how much of that risk is attributable to genetic predisposition, but it’s very clear that radiation and chemotherapy independently play a risk—or account for a lot of the increased risk. Having started out studying childhood cancers and wanting to see how much of it was genetic, because we really had no idea at the beginning, it’s been very natural to follow these other issues that have to do with genetics of a different sort such as fertility, reproductive outcomes, and risks of second cancers. So we’ve just had—you know, childhood cancers are relatively rare, so even at a place like Anderson, if you wanted to study very many cases you either collaborated with a lot of other institutions or you tried to study all of the cases that had ever been treated at your institution, whether you’re talking about the 1940s or 1950s or the new patients that walk in the door. I’ve been involved in some of all of that. We’ve had studies of all the families of Wilms’ tumor patients, of soft tissue sarcomas, of bone sarcomas, of brain tumors to try to identify how many came from families that suggested any sort of heritable syndrome. I’ve also been a participant from the beginning of the childhood cancer survivor study that has been led by [Leslie L.] Les Robison and includes about twenty different institutions around the US that have significant-sized childhood cancer programs, and that study started in the—I guess it was initially funded at about the mid 1990s and is continuing to the present time. It’s sort of interesting because we started out studying patients from diagnosis in the seventies and eighties. We’re still following those who are now in their forties and fifties and so forth, but there is a question about whether their treatment is now relevant because it’s changed a lot. So we’re now also starting a newer cohort of patients treated somewhat more recently, but of course they haven’t reached the same—they haven’t attained the same age. They’re still much younger so—

ROSOLOWSKI:

0:27:25

How about the groups?

STRONG:

0:27:27.1

Contribute to basically new information, but at some point money may run out to continue to be establishing new cohorts. These studies include extremely detailed information about the treatment, the radiation, the chemotherapy by drug, by dose, the radiation to various parts of the body—not just the site where the tumor was, but how much did it reach the ovaries or the testicles or the thyroid gland or whatever. So these are very expensive studies to do, and in today’s current time it’s difficult to obtain all the funding that would permit the kind of detail that we’ve tried to do in the past.

ROSOLOWSKI:

0:28:24.3

I wanted to ask you about the previous study we were talking about, which is the mutational model, and that had a lot of funding by the NIH from the very beginning. When did the NIH start funding that study and how much did you receive for that—or have you received for that study?

STRONG:

0:28:44

Well, it grew. It started out small. It started as what’s called an R01, which is just an individual investigator grant, but we had two or three people working together. Then we put together a program project and initially it was funded for three years, which is kind of, “Let’s see how you do.” But we had several projects, and then we just kept on renewing it. The last few years it’s been at about two million dollars of direct costs a year, but that’s with several projects and what we call cores that provide resources to several projects, so that includes things like collecting blood samples, establishing cell lines, extracting DNA, doing service-type functions that several different projects then use. That makes it more efficient than everybody setting up to do each one of those things by themselves. I think it’s been somewhat unique. There were not a lot of people studying childhood cancers or genetics in cancer when we started. Now of course everything has really moved into the genomics era, and so we’re trying to do that, too. So it really has represented, starting out, literally counting cancer in families and doing statistical modeling to ask whether these familial—whether these patterns of cancer in families were basically what you’d expect by chance or did they suggest something genetic and, if they suggested genetic, what sort of genetic model did they suggest. How high was the cancer risk if it was attributable to a single gene—all the kind of statistical modeling. Once we had the statistical modeling that suggested there was indeed a dominant gene in the sarcoma families—Li-Fraumeni eventually—then we were able to get money for genetic studies at the level of genetic linkage and, ultimately, identifying the genes involved. So it went from literally just counting cancers in families and doing that kind of analysis to gene hunting and now trying to do genomic analysis to identify other genes that might be involved, so that’s the way it has grown. Each new technology is more expensive than the last.

ROSOLOWSKI:

0:31:31

Now with the survivorship study, you said that it may very well work out that since those are very expensive studies to run, there may not be funding for them.

STRONG:

0:31:41

They are funded now. They’re funded for at least the next five years. Again, it’s not as much money as it could have used, but they’re fairly well set. The NCI has recognized that this one big childhood cancer survivor study is unique, and there is a survivorship program at the NCI, and it does work closely with the NCI, but it is being funded and we are now getting into the first real genetic analyses of the survivors, and that will be a long-time ongoing study I think because you can look at these genetic variants for second cancers, for cardiac disease, for obesity, for all kinds of things that are not only limited to cancer, but that have occurred as late effects as part of treatment and in part for whatever other reason but, again, it’s likely that not everybody is at equal risk given the same exposure, and so this will provide a resource of—as I said, I think there are about twenty thousand patients to conduct some of these genome-wide studies.

ROSOLOWSKI:

0:33:06

I was asking because I was alerted when you said that they’re expensive studies and the money might run out, so I was wondering what your impression is of how, in this era where there is more and more competition for resources—shrinking resources—I mean these are—this is a different kind of study. You’re not looking for the magic bullet drug or magic bullet—this is really almost in the area of prevention.

STRONG:

0:33:34.2

Yes, it is. It is. That’s part of its justification.

ROSOLOWSKI:

0:33:38.1

So how much commitment is there on the part of funding agencies or funding institutions to support this kind of work?

STRONG:

0:33:49

There is a focus on this. Now the NCI a few years ago made survivorship a focused area so there is money that is specifically set aside for survivorship programs, so it’s not directly hands-on competing with the moonshot bullet programs or the identifying the next major gene intervention program or whatever. Now as the whole budget shrinks then of course funds come out of every pocket, so in that sense there is competition, I think at the NCI level, survivorship has been recognized as a priority and that sets priorities at least for the cancer centers because to renew your cancer center grant you have to comply with certain conditions and prevention is one of those and survivorship fits in prevention, and so that encourages everyone to be sure that that arm continues. Again, it’s not the wealthiest part of the program probably but it is certainly an ongoing, recognized program.

ROSOLOWSKI:

0:35:22.2

I wanted to ask you also about the clinical cancer genetics program which got established in the 1990s, and if you could tell me how that came about and what it’s involved in right now.

STRONG:

0:35:33

It came about basically with the identification of the BRCA1 and two breast cancer susceptibility genes. They got so much press. There was so much written about them. There had been so much buildup to identifying those genes. Newsweek, Time, Ladies Home Journal, every imaginable news and women’s issue or journal had had articles about the race to identify the genes, what it would mean, tragic stories about families in which there had been breast cancer or breast and ovarian cancer over several generations. So when those genes were identified it was a huge media event and in both directions. There were people who thought this was wonderful. “I want to be tested.” There were people who thought this was going to be the next stigmatization tool used against women. It’s when really all the discussion about genetic testing for cancer susceptibility, about who should be tested, when they should be tested, insurance issues, genetic discrimination. A huge amount of attention arose based on the identification of those two genes, and they were identified in 1994. Cancer centers were talking about what to do about it because their breast cancer patients were coming in and saying, “I want to be tested” or “I don’t want to be tested.” and there were certainly plenty of families who had multiple cases of breast cancer and young-onset breast cancer. It’s the cancer for which we have the best family data. Women are very aware of their family history of breast cancer. They may not know anything about their family history of any other cancer but they know about the family history of breast cancer. It’s the most reliably reported. It was definitely the place to start—where we had the best starting point with the best information to move forward.

ROSOLOWSKI:

0:35:22.2

I wanted to ask you also about the clinical cancer genetics program which got established in the 1990s, and if you could tell me how that came about and what it’s involved in right now.

STRONG:

0:35:33

It came about basically with the identification of the BRCA1 and two breast cancer susceptibility genes. They got so much press. There was so much written about them. There had been so much buildup to identifying those genes. Newsweek, Time, Ladies Home Journal, every imaginable news and women’s issue or journal had had articles about the race to identify the genes, what it would mean, tragic stories about families in which there had been breast cancer or breast and ovarian cancer over several generations. So when those genes were identified it was a huge media event and in both directions. There were people who thought this was wonderful. “I want to be tested.” There were people who thought this was going to be the next stigmatization tool used against women. It’s when really all the discussion about genetic testing for cancer susceptibility, about who should be tested, when they should be tested, insurance issues, genetic discrimination. A huge amount of attention arose based on the identification of those two genes, and they were identified in 1994. Cancer centers were talking about what to do about it because their breast cancer patients were coming in and saying, “I want to be tested” or “I don’t want to be tested.” and there were certainly plenty of families who had multiple cases of breast cancer and young-onset breast cancer. It’s the cancer for which we have the best family data. Women are very aware of their family history of breast cancer. They may not know anything about their family history of any other cancer but they know about the family history of breast cancer. It’s the most reliably reported. It was definitely the place to start—where we had the best starting point with the best information to move forward.

ROSOLOWSKI:

0:37:58

Can I ask you just for a second, what happened at MD Anderson in 1994 as a result of that? What do you recall here?

STRONG:

0:38:06

Nothing happened just immediately. People had to figure out how to do it. We were not doing the testing. They’re both very, very large genes that were not easy to test, and for a good while we knew a lot of the mutations were going to be missed, so one of the groups had identified the BRCA1 gene initially—the first ones to identify it ended up setting up a company called Myriad Genetics and offering testing as a commercial offer. We had had genetic research studies. My colleague David Anderson had been studying breast cancer in families for decades, so we had many well-documented families that were candidates for this testing. We did not rush into setting up a clinical program. Again, this requires a lot of collaboration between different groups who don’t necessarily talk to each other very much. You have to set up criteria. You had to know what it was going to cost. It took a while before insurance was covering it, and there was a big concern about discrimination. That was huge. Some of the first people who had testing did it under the name of Mickey Mouse or some anonymous name. Initially the information was not put in the medical records. This created a real conflict between the genetic testing group and the clinicians. They said, “We sent you our patient because we want to know.” and we said, “They don’t want you to know. We can’t tell you.” It just took years to sort through all these things. So a big part of the delays had to do with fear of discrimination.

ROSOLOWSKI:

0:40:03

Was there some kind of official committee set up at MD Anderson to deal with these issues—or was it sort of informal conversations?

STRONG:

0:40:12

To some extent, yes, by about 1996 or 1997. There were several of us who convinced our powers that were at the time that we really needed to do something and got together and sort of set up a program for clinical genetics for counseling, for testing. As I say, initially, for several years, this information was kept in charts that were in locked files, and the information was given to the patient. The patient could give it to their physicians, so that was fine, but we couldn’t as a—you know the way you would typically document things in a medical record, we didn’t so it. It was an awkward situation. Some of the patients didn’t want their physicians to know, which was really not a very smart thing to do, but there was so much fear about insurance discrimination for a while that that was the way it was handled most places. Then some people began putting it in the record, and gradually more and more states had laws about genetic discrimination. Finally, in the past year or so we have federal legislation, but for a while it was patchwork. One sister could be in a state where there was one law and another sister was in a state where there was a whole different law, and there was concern about employment discrimination. I can remember ethics conferences popping up everywhere about it. There was just really a lot of fear, and the rules—the laws—were not all that clear. So that sort of kept it from really moving into the central marketplace for a while. The other thing was it became apparent fairly early on that there were specific mutations that were relatively common in the Jewish community. There are many other genetic diseases that are unusually common in the Jewish community simply because of the—any community that has cultural, or geographic, or so forth somewhat isolation that happens, but it became, again, a big fear in the Jewish community that this was going to be another form—another ability to discriminate against the Jewish women. So for a long time they were a group that was very much against genetic testing for these genes. So there were just—there were lots of plusses and minuses, and we were not among the leaders in the field. We did not jump into it early on, but finally there was just so much patient demand—there were a lot of patients that did want to know, and did want to be tested, and did want their daughters to know or their sisters to know—have better information than they did, and did want to have screening, did want to be proactive. So at the national level you had these competing leaders—lawyers—women who were lawyers who got involved.

ROSOLOWSKI:

0:43:56

I wanted to ask you, you said that a group of you got together and spoke to people in the administration. Who were the other individuals that were part of that group who could have advocated—or began to raise the discussion about what to do in this situation?

STRONG:

0:44:14.0

They were people in—most of us were largely I guess in research—or at least came from a research background, but people from statistical genetics who were well aware of the background of a dominant gene, people who were in gynecology and breast—in other words involved in breast and ovarian cancer genetics and research. Let me think—oh well, an important group—the psychosocial research group—very much concerned about psychosocial impact and how to measure that and what did we need to do about that. Let’s see, who else?

ROSOLOWSKI:

0:45:13

Do you remember specific individuals who were involved in at that time?

STRONG:

0:45:16.3

Oh, sure. Someone named Chris [Christopher] Amos, statistical genetics. Gordon Mills, who was a gynecology clinician in research. Let’s see, Susan Peterson with psychosocial—a behavioral science person. We had a bigger group than that. I’m just sort of blanking. Then, what we also did was get together with people at Baylor and so we had a group that met fairly regularly and had case discussions and discussed the different cases and what we were doing. Baylor had gotten into this earlier. They had always had a strong medical genetics program and they got into this area much earlier than we did. MD Anderson had never had genetic counselors so we didn’t have an infrastructure for this to start with like, for example, Baylor did. Anyway, we finally got the institution to hire a genetic counselor and we set up a program. We were over in what was then the prevention area. We were in kind of a little isolated series of rooms, and we had a counselor, an administrative person, and then gradually we hired more and more counselors.

ROSOLOWSKI:

0:47:13

What was the process of getting that to happen? I mean John Mendelsohn [Oral History Interview] would have been president of the institution at that time. So did your group get together and have conversations with him? How did you educate the administration about the need for this at the time? What was that conversation about?

STRONG:

0:47:31

I guess there were two somewhat independent directions. Gordon Mills worked for [Robert] Bob Bast [Oral History Interview], and talked to him about it. Of course Bob had a gynecology background and so he could appreciate the concerns about ovarian cancer.

ROSOLOWSKI:

0:47:55.2

I’m sorry; remind me, Bob Bast’s position?

STRONG:

0:47:57

He’s currently—at the time he was head of the Division of Cancer Medicine. I talked—I went through the more basic research background and talked to [Frederick] Fred Becker [Oral History Interview] who was the vice president for research or for basic research at the time. I think it was becoming apparent that women wanted this, and they were going to go wherever they had to go to get it. The other thing, I’m sure from the clinical side and breast, they were getting asked about it, and we knew some of our patients had gone over to Baylor to have testing and so that was really part of the—simply marketing need to offer this service. There were a lot of young women with breast cancer who were demanding this.

ROSOLOWSKI:

0:49:00

It’s a really interesting response to market pressure. I mean that’s sort of the really interesting thing about these medical conversations—that on the one hand it’s the right thing to do, and on the other hand it’s the savvy thing to do financially, for competition and market share basically. What were your conversations with Fred Becker like? Was he on board from the beginning? How did you have to convince him?

STRONG:

0:49:28

I don’t know. It took him a while—actually, initially, before the people that I mentioned to you, several of us who were in the more basic science or who had been in the graduate school around medical sciences where there was a human and molecular genetics program. This included a person who trained genetic counselors over at the medical school who had been a genetic counselor who then got a PhD and had worked at Anderson for a little while and then moved over there—[Jacqueline] Jackie Hecht. She’s now, I think, an associate dean at the medical school. We got together with her because she knew genetic counseling. Several of the researchers here at Andersen; Michael Siciliano, who did more basic genetics. People who were here then—Marc Hansen, who is no longer here, who was a molecular geneticist; cytogenetics people. All of us from research got together and said what would it take. Jackie Hecht was a big help because we didn’t really know what it took to set up a clinical genetics program, and she had that running over at the medical school. So we put together a proposal and every year we dust it off and send it up again. That had really predated BRCA, but not by too much, and so once we had BRCA then there was all the hoopla about that, but there was also much more of a marketing issue than there ever was before. Eventually I was really pushing Pediatrics to do it. Archie Bleyer was the head of pediatrics at the time. He was reasonably supportive of it. So we used all those things and then got more clinical people involved, and it really obviously took getting clinical people involved to make it happen.

ROSOLOWSKI:

0:51:46

It was officially set up in—so the clinical cancer genetics program was set up when in the 1990s—beginning, middle, late?

STRONG:

0:51:55

I would guess around 1997. That’s a guess.

ROSOLOWSKI:

0:51:58

So fairly late. You said it started with one genetic counselor and then grew?

STRONG:

0:52:06.1

Grew. Sure. So Gordon Mills and I were initially co-directors.

ROSOLOWSKI:

0:52:13

What were your goals for that when you set it up? What was your plan to grow that program?

STRONG:

0:52:22

Initially of course the big demand was in breast, but Gordon and I both really wanted to see a more universal program but it was nice that during those years—1994 and 1995—colorectal cancer susceptibility genes were identified and there had—in addition to the breast cancer studies with Dave Anderson that I had mentioned, there had also been studies of colorectal cancer families and Patrick Lynch had been involved in some of those so there were hereditary syndromes there. We sort of mapped out known hereditary syndromes that would be reasonable to refer to this clinic but, honestly, breast was by far the dominant one for a long—it is today. It’s still two-thirds of the cases. At that point it was probably eighty-five percent of the cases if not higher because the clinicians were really in tune to it because their patients came in talking about it, but our goal was to have a clinical genetics program that would eventually be possibly a department with a number of faculty members. That plan did not—there were several plans that kind of turned over over a period of years. That plan, over the long run, by the early 2000s—or maybe mid 2000s—probably mid 2000s—it became clear that really the genetic counselors probably would be more effective within departments, rather than having their own—having a unit that was all clinical genetics.

ROSOLOWSKI:

0:54:29

Why was that?

STRONG:

0:54:30

They worked as a team with the research nurse and the clinician and so they worked well with one or two clinicians and they really got where everybody knew them and knew what they did, so they weren’t just coming in kind of from nowhere. They were a part of the team. They went to the department meetings. They went to the tumor boards, but that meant they didn’t know everything. They just knew breast, or they just knew GYN, or they just knew GI or something. But that has worked very well. They have become very well integrated into the departments. The only down side of it is that we don’t have enough counselors for all departments, so some of the clinical departments refer to a more general group of counselors and they kind of see everything, but the beauty of having the counselors within the department was it just increases everybody’s awareness of genetics, and the departments that don’t have counselors in them never think about genetics or rarely think about genetics. So having counselors in the clinics is a very effective tool in educating everybody up and down the line about the importance of genetics, what are the criteria, when do you think about it, how do you do it, how do you refer them. There are still clinicians that I talk to because I know about—I hear through the rumor mill about a case and say, “You really need to refer this person to Genetics.” and they say, “Well, how do I do that?” It’s a very simple on-line referral. So there are still a lot of departments that we have not made inroads into.

ROSOLOWSKI:

0:56:17

Such as?

STRONG:

0:56:19

Sarcoma.

ROSOLOWSKI:

0:56:21

And that was really on your radar real early.

STRONG:

0:56:23

Brain. On my radar. Breast by far the most. We could keep hiring genetic counselors endlessly because now sort of every woman wants to have a genetic counselor, but breast, GYN, and GI—gastrointestinal—are the big ones. We’re getting more—we’ve got someone who is trying to become a full-time pediatric genetic counselor, and we’ve got someone trying to work more frequently with melanoma, but there are still lots of areas that they will occasionally refer someone but where it’s really not on their radar screen and we know we’re missing a lot.

ROSOLOWSKI:

0:57:25.1

So I’m trying to get a sense of how this program works because it seems really decentralized.

STRONG:

0:57:28

It is. It is.

ROSOLOWSKI:

0:57:30

What is the central part? Who is in charge? Who makes decisions about—

STRONG:

0:57:37

It’s not—there’s a committee. There’s a committee and it includes a number of people that I mentioned earlier; Chris Amos, who is a statistical person, Susan Peterson, who is psychosocial—let’s see—Marsha Frazier, who does research on GI, and then some of the clinicians. Banu Arun is the breast medical oncologist who does the high-risk clinic. Karen Lu is the GYN high-risk person. Patrick Lynch is the GI high-risk person, and that’s about it. We have an administrator, and we have a programmer, and all the genetic counselors.

ROSOLOWSKI:

0:58:31

How many genetic counselors do you have now?

STRONG:

0:58:35.2

I think we have nine. It happens to be—we happen to have a fair amount of turnover. They are frequently young women who come here on their first job and, you know, it’s an age where people have other commitments and competing interests so we do tend to have a fair amount of turnover, but we’ve got a good—we’ve got several now who have been here for a long time and that’s really helped the program. For a while we just felt like we were kind of like a training program. We have really, really good people but every two or three years you were turning over.

ROSOLOWSKI:

0:59:20.3

That’s tough. That demands resources, too.

STRONG:

0:59:23.2

Right. It is decentralized. We’re all in different departments. We all have different—some of us are primarily in research. Others are primarily clinicians. But other than not being as widely distributed throughout the institution as we might be, it seems to work pretty well. We have clinical conferences—one a year—where families, patients come and have a chance to hear lectures and ask questions and things like that, so they’re sort of patient education conferences.

ROSOLOWSKI:

1:00:09

How do you foresee that program evolving? What are you talking about with your committee for plans for that?

STRONG:

1:00:17

We’re really taking a look at where we are and where we should go. It’s clear we can’t continue to grow the way we have, which is mainly hiring more and more counselors in one or two departments. Now the idea of genetic predisposition is not quite so new. In some areas it may be that we can do a lot of the education at least in part by video, by satellite, things like that. Right now the way it is handled is the way genetic counselors have traditionally operated where it’s face to face—one counselor, one person. They take a very detailed family history and draw a pedigree and collect detailed information about the cancer types and things in the family. From that assessment of the person’s personal history and the family history they determine whether they’re appropriate for testing, and that can include using computer programs that have been developed. Reviewing all the data gives you kind of a score. Then they talk to the person about testing and the risks and benefits of testing and that, again, takes a while. So that first conference is usually an hour. Initially it was only done on people who were at very high risk, but as we have learned more and more it’s being done on people who are not at nearly as high risk because we found that some of them do indeed carry mutations. It’s not just the highest—the identifiably highest risk ones. Then they come back for an appointment. Then you have to get the blood drawn and sent off for the testing, and then they have to come back to have the results disclosed. Sometimes you do that on the phone, and if it turns out that the results are negative it may be that there’s another gene you might test for, and so that’s another discussion. So it’s very, very time intense—one-on-one type time intense, and these are ongoing discussions. I don’t know how it will all be worked out, but there’s certainly a sense that we need to look at some other models. Maybe the education phase can be done with a group. Maybe it can be done with videos. Maybe it can be done in advance of the person coming in and then you address their questions. There are just lots of other ways I think that we have to explore doing this. Now, again, the BRCA is so well-known—it’s gotten so much publicity that that should be the easiest one to do kind of group sessions, and there are so many people who want to be tested. For that group in particular I think a different approach can be done. For GI, just based on the nature of the genes that were identified, there are some other things that can be done to—that are done to narrow down the group who should be counseled. There are some features of their tumors that the pathologists can pick out and so all of those should be talked to and not others for example just because of features of the tumor that represent the changes that occur in certain genes. So it will not be the same for every tumor type or department. What we’re very excited about, but it hasn’t been tested at all yet, is hooking up with something called PreCare. PreCare is supposed to go live in some departments as a kind of test system this fall. PreCare is a system by which a patient can complete a great deal of their information before they ever set foot in the door. Right now you don’t really exist until you have an MD Anderson number, and so a lot can’t get started until you’re actually registered. With PreCare a lot of this information could be filled in online from remote and you could be identified by some identifier which may or may not turn out to be an MD Anderson number—I don’t know all the details of it—but this information, it includes certain things like a minimal family history. We can then screen and we can identify in advance individuals for whom genetic counseling may be indicated or not, and people can be kind of put in groups of higher and lower risk. Again, not all the details of how this is going to be—how the interconnections are going to go, but it appears feasible. So then what we would have the ability to do would be to develop some algorithms and if personal plus family history equals x, then the physician, before he or she ever sees the patient, can get an email suggesting that they be referred for genetics, and we would already have a great deal of information about them without taking up more hours of everybody’s time. I think things like that are the main direction that we see as the future, whether it’s going to work exactly like that and whether PreCare is going to be the vehicle we hope it is, I’m not sure, but PreCare is being mounted mainly to help us get patients in without such a long lag time before they’re actually getting into the system where we can start doing something to benefit them.

ROSOLOWSKI:

1:07:11

Is PreCare the name of a software package or is that a process at MD Anderson? I mean I can look online— STRONG:

1:07:18

I honestly don’t know.

ROSOLOWSKI:

1:07:19.46

I’ll look online and see.

STRONG:

1:07:22.3

I don’t think it’s a—I think it’s more than just a software package but it may come from that. I don’t know.

ROSOLOWSKI:

Okay. I mean I talked recently with [Deborah] Debbie Houston [Oral History Interview] in information systems and it’s kind of amazing all of the way that software is tweaked to create this really interesting applications.

STRONG:

1:07:43.0

But we are so painfully behind in all of that. I mean we’re pathetic—we are.

ROSOLOWSKI:

1:07:48

Why do you think that is?

STRONG:

1:07:52

It’s not because we haven’t thrown a lot of money at it. We haven’t listened to the people who would be using it. People have come in and hired experts, and they set up all these complicated systems, and they don’t ever talk to the people who are going to use them, and they don’t work very well. That’s my opinion.

ROSOLOWSKI:

1:08:17

What difficulties have you—what challenges have you faced in this?

STRONG:

1:08:22

We set up our own—completely our own pedigree system. Clinic Genetics has something that’s a little bit similar. I had set up a system for my own research, and we set up one for something that was called the Cancer Genetics Network, which was a national program, but our part of it—the national network—was a Texas cancer genetics network and it was Anderson, Baylor, and UT San Antonio. Chris Amos, again that I mentioned earlier, worked with us and set up a common database for all of us for this NCI study, which, unfortunately, has just terminated—terminated funding—lost funding in other words. So that went from about the mid-nineties until now. We had those kinds of backgrounds of setting up databases that would include the ability to draw pedigrees and do pedigree analysis, and that’s what the counselors have used. Although it has obviously been tweaked a lot, but it’s totally independent of anything else at MD Anderson. It doesn’t interact with anything.

ROSOLOWSKI:

1:09:46

Now is that going to be something that will have to be linked once PreCare goes—?

STRONG:

1:09:52

It will be linked to PreCare in some way or another so that you will be able to see a pedigree.

ROSOLOWSKI:

1:10:00.2

How are you going to get that done—without going crazy?

STRONG:

1:10:07.2

We’ve got the same programmers that really kind of set up my program and then the Cancer Genetics Network one and the Clinical Cancer Genetics one now, and they will be working with the people in PreCare.

ROSOLOWSKI:

1:10:19

Wow, that’s really neat. I wanted to ask you about how your discoveries in this area and your work—I mean like the p53 gene, the working with survivors, working with these models that give you all this information about patients creates this very wide range of ethical dilemmas. We’ve talked about it, but I’m wondering, there’s this—I’m not even quite sure the question I want to ask—because you’ve kind of gone through the process with struggling, like, “How do we deal with this?” It just seems like such dramatic information suddenly to hold about individuals, and then you have, how do doctors make decisions based on this information? How do legislators make decisions? How do individuals make decisions? And then here you are, the researcher who is actually providing the basic information, and do you feel that in that role you have a special position as being a person who provides that information? Do you have to look at your own ethical relationship to that information? It just seems like, as you’re the person who is making the discoveries and furnishing this—that it puts you in a very unique position, so I’m just wondering if you think that’s true.

STRONG:

1:11:54.0

I think that we’re getting to a point of thinking about genetic information as not so just totally different than other kinds of medical information, but that’s been a gradual change, and it certainly hasn’t finished. Many people do think of genetic information as something so intensely private. It’s totally you. Your genetic information is you and no one else in the world. Even if you’re an identical twin there are things that change over time that are somatic changes but still make you slightly different than your twin, depending on how the genetic analyses are conducted. It is something that is very personal and people feel very strongly and private about. In another ten years we’re going to be able to know our genome sequence. We’re going to know we all carry genes that put us at increased risk of things and genes that reduce our risk of things, and it’s not going to be a stigmatizing thing anymore because we all carry them. In the studies that have been done to date doing whole genome sequencing to some significant depths of just random people they find an average of something like 200 potentially deleterious mutations in a given individual, and this is a perfectly healthy, fine individual that could have been predicted to be deleterious, so I think we’re going to have—it’s going to be less mysterious to us basically. It’s going to be more like something that we can look at and have some interpretation for. Right now it’s still very scary to people, very mysterious. It’s sort of like, “Who am I? Can you see into my soul to look into my DNA?” I think that’s what has made it the difficult ethical issues that you bring up, but I think gradually we’re going to become more comfortable with it. We also have blood pressure readings and all the various other kinds of measurements that we have—some things that we can change, some things that we can’t change—and we’ll begin to learn how to live with those things that we can’t change—hopefully a little better using the knowledge about what they are. But it will take a little while. Some people are very scared of this information, as if it’s going to expose something very hidden, mysterious that they have no control over. It is control that’s part of the issue. You have no control over what your DNA is going to say. I think that over time, as we become more comfortable with the notion that this is part of us, like whether we have the right number of arms and legs or fingers and toes or whatever, we’ll learn to handle the genetic makeup that we have and maybe in some cases modify some of the things that we would prefer not to have, but I think there’s going to be a transition. Most of the surveys of people who have been invited to participate in these research studies where there would be genome sequencing, and it’s all going to be stored somewhere, and we know we don’t know how to interpret most of it right now—people have said, “Yes, I want to participate. I understand that this information is going to be used by many different research projects. I don’t have to be the only—I don’t mind this information being shared.” That’s kind of a bottom line is that if you’re a participant in one of these studies those samples can be used whether you’re looking for breast cancer, or schizophrenia, or autism, or hypercholesterolemia, or cardiovascular disease. I mean in terms of big population studies, these samples can be used to look at a very wide range of things, and you have to consent to that, that you know you’re going to be part of that and jillions of people are going to be playing with your genome. It’s been really quite positive how people want to be part of that, and that’s sharing your information, and that’s sort of demystifying it a little bit. It’s taking out the, “Oh my God, what are they going to know about me?” kind of situation. I think that is showing that at least education is evolving. I don’t know what people are being taught in science these days in junior high and high school. I hope they’re getting a decent science education. I’m very worried about that because they’re going to need to be able to understand risk and what risk means—what a ten percent risk means or a ten-fold increase in risk means. There’s just so much information that will be available that we have to have a population that will be able to understand to use it effectively.

ROSOLOWSKI:

1:18:13

On the flip side, with physicians—you were mentioning earlier the number of departments even here in MD Anderson Cancer Center that just don’t have awareness. What do you think is needed to overcome that communication gap between geneticists and individuals in those fields?

STRONG:

1:18:34

It’s going to be a real generation thing. I don’t know exactly. Certainly there are all kinds of continuing education things. There are software programs that are written, for example the BRCA gene we talked about some. There are software programs where if you just put in the family history and personal history information it will give you a risk. They are always being updated and adding new things, but I think there’s going to be a lot of effort to sort of develop a Watson for genetic conditions for physicians.

ROSOLOWSKI:

1:19:16

What does that mean—a “Watson”?

STRONG:

1:19:17.3

Watson? The computer—the robot that won—that went on TV and that played—won the chess game and all that. Isn’t that Watson?

ROSOLOWSKI:

1:19:30

I was thinking Watson and Crick—or Dr. Watson with Sherlock Holmes and there were—(inaudible, speaking at the same time).

STRONG:

1:19:36.0

I’m sorry.

ROSOLOWSKI:

1:19:36.3

No, that’s okay. My brain was just trying to figure out which one.

STRONG:

1:19:40

I think there will be a lot of software to help. Now you still have to know how to think about it a bit, but I think that’s one dimension, because it’s going to be more information than any of us has the ability to handle on our own.

ROSOLOWSKI:

1:20:01

And the generational piece comes in because you think maybe—

STRONG:

1:20:09

Depending on when you were educated you may have had very little genetics. I didn’t have very much genetics in medical school. I happened to be interested in it so I sort of sought it out, but you will kind of learn from the people around you. Fortunately there are always new people coming into the field, whether it’s a private practice or whatever kind of practice we’re going to have in the future. There will be—I assume there will be people who specialize in genetics or—actually it won’t be genetics. There will be people who specialize I suppose in cardiovascular genetics or cancer genetics. Certainly with genetic counselors that’s the way it is these days, unless you live in a very, very, very isolated area and just kind of have to do everything, and geneticists will just be part of teams that approach—that handle the various common as well as rare diseases. I don’t assume that everybody is going to know genetics, and the—what do we call them—Informaticists—are really going to be critical, and maybe they can put it into forms that you can pull out on your own or not. I don’t know. Those would be the programs that one could be able to plug in clinical information and you get at least a series of options.

ROSOLOWSKI:

1:21:49.2

Well, it’s an era of hyper-specialization and so having tools that people can use to easily make another specialty dovetail with our own seems really key.

STRONG:

1:22:00.3

And of course all that depends on the electronic medical records and all that sort of thing so that you know not just one piece of a patient’s status, but all their other issues—genetic and otherwise.

ROSOLOWSKI:

1:22:12.3

So it will be interesting to see how this linkage with PreCare evolves because that’s kind of a first step toward that.

STRONG:

1:22:18

It is for genetics being more integrated overall.

ROSOLOWSKI:

1:22:23

Yeah, that’s really interesting. I’d like to shift gears a little bit and talk a little bit about some of your administrative experience if that’s okay. We’ve kind of brought research to a close for a moment. If that’s okay with you? One of the things that I have in my notes is that in 1981 you became the first woman faculty member to have an endowed professorship.

STRONG:

1:22:55.1

Oh yes, that was nice. There were not very many women here then.

ROSOLOWSKI:

1:22:59.0

Yes, so that was something I did want to talk about. That professorship, as I understand, became the Sue and Radcliffe Killam chair. So I wanted to ask you about that process—how you came to have that endowed professorship. What do you think the factors were? And then also the transition of that professorship into the endowed chair.

STRONG:

1:23:25

Well, I have to be honest that no one was more surprised than I. I guess some of the ideas of genetics were relatively new and it was a much smaller institution. It was much easier to know a wide range of faculty, whether basic or clinical, and—I don’t know—maybe I was sort of outspoken. I was very fortunate. A lot of really unexpected kinds of things happened to me. I ended up being on the national stage at an early age. In 1975 I had just come back to work full time, and I went to a meeting. I was a speaker at a meeting and I was very excited because I had been a little out of touch with people for a bit. It was Genetics of Human Cancer, put on by NCI, and I gave a talk that had to do with this second hit—the second cancers and radiation and so forth as a second hit in retinoblastoma. After that I was asked to come and give a talk at the National Cancer Advisory Board, and that’s a very senior group that advise NCI. I didn’t know what the National Cancer Advisory Board was. I was asked to come and give a talk and I did, and at that meeting they were proposing a new committee—someone was proposing a new committee that was called—

ROSOLOWSKI:

1:25:26.0

Is this the Data Evaluation Human Risk Assessment proposition?

STRONG:

1:25:30

That was a subcommittee. I’m trying to remember what the committee was. Anyway, they were proposing a new committee. This was when everybody was worried about carcinogens, and how to do risk assessment, and if it caused liver cancer in a mouse did that matter to humans and all that kind of—so I was on the Human Risk Assessment—I was asked to be on this Human Risk Assessment subcommittee. I was on—this was a—I mean most of the people I was with—here I am an assistant professor and everybody else on there is a department chair or runs a cancer center or some big national laboratory or something. Of course, again, there weren’t very many other women on the committee, but it was an interesting experience.

ROSOLOWSKI:

1:26:23

What were you doing exactly?

STRONG:

1:26:26

We reviewed reports that came out of labs talking about the effect of these various different—they could be chemicals, drugs. They were maybe things that were used in cosmetics—all these different kinds of chemicals. They did toxicology testing and again, most of it was a mouse model, but in some cases there were other animal models, and then the question was, “How did that really apply to humans?” and “Was it a threat as a mutagen or a carcinogen?” So we reviewed all of these reports and then kind of came to a consensus on what sort of risk this might pose. I was on that committee for a few years, and then it got taken out of the NCI and moved to the National Toxicology Program, which was then looking not only at end points of cancer, but at all other—lots of other kinds of end points of disease.

ROSOLOWSKI:

1:27:47

You were on that for four years. I have 1976 to 1980. That’s a—

STRONG:

1:27:51

That’s when they moved it to a whole different—outside of NCI and more generic for—

ROSOLOWSKI:

1:27:58

Did you continue on it after that?

STRONG:

1:28:00.2

No, I was asked to stay on but I decided that I wanted to get into something that would have more relevance to human cancer. I don’t remember what year, but then I was asked to be on a board for the—all these groups have changed names so often, but there was an epidemiology branch, and there was a board of scientific counselors I think it was called at that time. I was asked to be on that fairly soon. I was on that for a while, and then I was asked to be on this National Cancer Advisory Board that I’d given a talk to in 1976. This was really a question because [Robert] Bob Hickey, who was executive vice president or something and I were both on the committee at the same time, and I was pretty junior. I was still a pretty junior faculty member. Anyway, I guess what I’m saying is I was getting a lot of national attention and, I don’t know, but that may have had something to do with the endowment. Also, I had gotten hired without ever having any startup funds. That was partly the problem of just kind of hanging around—of having been here as a post-doctoral and then kind of continuing. I was never really, really recruited in the usual sense, and so I had never had any startup funds. I hadn’t really had what one might normally have gotten in the way of resources. So this was a very nice award. I don’t know whose idea it was exactly or exactly how it came about. We have an endowment committee of course—a committee that looks at all the possible endowment sources and makes recommendations to the president for appointments.

ROSOLOWSKI:

1:30:19

You said that you were outspoken. Why did you describe yourself in that way?

STRONG:

1:30:24

I just mean trying to tell people that genetics in cancer was important—not in a rabble-rouser sense, but just trying to bring awareness. I would somehow get referred, and I’m not sure what the word referred means, because it wasn’t like an official clinical kind of referral, but I would hear about families that had an unusual amount of cancer or young-onset cancer or whatever. So then sort of as a research project—a kind of miscellaneous one—I would see them and talk to them about it and try to figure out what we should do to identify whether there was a syndrome—a specific syndrome, even though we didn’t have any genetic testing at that point. It would be based more on the clinical pattern of cancer or certain specifics of the tumor, just kind of unofficially doing genetic counseling—I guess you would call it, again, in a non-credentialed sort of way, within both pediatrics and some of the adult—particularly GI services. David Anderson did a little bit of that with breast, but I was more medically oriented than he was—or clinically oriented than he was, but occasionally we would have conferences with some of the clinicians to try to figure out what was a good option for this person, particularly if there was some VIP who came in and had a strong family history of cancer, and the institution wanted to do something special. I got to know various people around the institution just through those kinds of activities.

ROSOLOWSKI:

1:32:22

I read also that you came to know the Killams and became friends with them. How did that happen?

STRONG:

1:32:30.2

Oh, definitely. Actually—I mean this is another piece of the puzzle, and I don’t know whether someone thought they were being cute or not. My dad and Radcliffe Killam were at Harvard together, and they were both from Texas and knew each other. The Killams lived in Laredo, and my dad loved to hunt, and he went down and hunted with them a lot. He held court in Laredo regularly when he was chief judge and would then hunt with the Killams. So they were long time family friends. Now she had—they had—I shouldn’t go into it. They had family members who had been patients here and he was in kind of the oil business and all and was a regular donor to MD Anderson. At some point I assume he was approached to endow a chair. I don’t even know if he knew that I was at MD Anderson. I really don’t know how all that played out, but there was a little something more to it in terms of putting their donation with my name than just random chance.

ROSOLOWSKI:

1:34:03.0

Yeah, I could see that. I mean you can look at it—

STRONG:

1:34:04

Whether it would have happened around the same time with some other donor, I’ve never known. I don’t know what—I don’t have any idea sort of exactly how that happened.

ROSOLOWSKI:

1:34:18

But it kind of goes to another issue I was going to ask you about, which is really the Texas connection. That you’re from a long-time Texas family and this is a Texas institution and now you have kind of a Texas chair. It’s sort of a nice story, and I was wondering just about your impressions of that—about sort of how that might deepen your connections with the state. Then, on the flip side, what does it mean for Texas to have an institution such as MD Anderson?

STRONG:

1:34:55

Well, I certainly have a very, very strong commitment to MD Anderson. I think we’re very lucky that the trustees of the MD Anderson estate chose to buy swampland out in the middle of nowhere and develop a medical center. I think we’re very lucky that R. Lee Clark came around and convinced people that we should have a cancer center. No, it’s known all over the world. I can go anywhere and people say, “Where do you work?” and I tell them MD Anderson. So it’s a tremendous benefit to Texans and to the world that we developed this place that really focused so much on cancer and on cancer care. I’m very glad that it happened and I just hope we continue to provide the same level of care and so forth for which we have been historically known. I mean the downside is of course it’s a huge institution now. It’s run much more like a corporation now. There are a lot of things personally that are less appealing about all that but, on the other hand, you just get such amazing stories from people who have come here from wherever under such desperate circumstances, and so I’m very proud to have been here. I do get teased a great deal when I’m out of the state about all of my Texas connections, but I’m used to it. It’s very easy if you’re introducing me. It’s all University of Texas, so that’s very easy.

ROSOLOWSKI:

1:36:57.2

I mean there’s an up side and a down side to everything, but you said that you’re very proud of your Texas connections. I also read that your maternal grandfather was the first pediatrician in Texas. Is that true?

STRONG:

1:37:13

That’s what I was told. I’ve never been able to absolutely document that, but he was from a family that had been physician surgeons, and the story that I always heard was that he had an allergy to whatever the powder or the type of gloves that they had for surgeons then and he couldn’t go into surgery, so he decided to go into pediatrics, and pediatrics was a very new specialty at the time. I know he practiced here in Houston. As a matter of fact, the person that was his partner was my pediatrician when I was little—when I was growing up. So I know all that part of it, but I just haven’t—a number of different people from different situations tell me that that was true.

ROSOLOWSKI:

1:38:04.3

And you’re named for that side of the family—Connally—is that your maiden name from—?

STRONG:

1:38:09

My maiden name Connally was my dad’s side of the family.

ROSOLOWSKI:

1:38:20

Going back to the issue of the size of MD Anderson, what are some of the down sides that you see now with the enormous growth of the institution, particularly since the 1990s?

STRONG:

1:38:33

Well, it’s just all the problems of growth. There’s such a—you’re so far removed. The people who make the decisions are so far removed from the people who are carrying out a lot of the work, and there’s so much growth in the administration and yet administration doesn’t really bring in the money. Look at all the MD Anderson documents these days. We’re a work force. What does that tell you? You think you’re a faculty member and you’re contributing to the institution and you’re referred to as the work force. It’s just a very different attitude. I mean I think the attitude toward patient care—toward caring about patients and all that is outstanding, but I think that, like other academic institutions, it has become so much more focused on money.

ROSOLOWSKI:

1:39:47

What do you think would need to happen to kind of turn that around? Or what would you like to see the attitude toward faculty, and research, and the physician scientists? What kind of attitude would you like to see?

STRONG:

1:40:06

I’d like to see a lot better communication, and everybody acknowledges that this is a problem. You have the senior administration. You have division heads, and you have department heads, and then you have the faculty down here, and then you have all the other support people that support up and down the line, but the communication is very, very poor. If the senior administration tells the division heads something, they expect the division heads to pass it on to the department heads, to the faculty. It doesn’t happen. It doesn’t happen and, as I mentioned with IT, the programs—many of the systems that are developed—we’re given all these mandated things that we have to fill out and do for this, that, and the other, and all these online things. Nobody ever tests them, and so you can spend days tied up with something that doesn’t work. I really don’t want this to all be in there.

ROSOLOWSKI:

1:41:10

Well, we can turn off the recorder, or we can—

STRONG:

1:41:13

I just think that there needs to be more faculty input at all levels. I don’t really care about having all of this go in there.

ROSOLOWSKI:

1:41:24

That’s fine. We can skip over that.

STRONG:

1:41:28.1

I mean we can indicate that it’s a much bigger institution and the communication is not always ideal. There are lots of ways that that could be improved, but I’d rather not go into the other details. There are just frustrations that I think you would find if you talked to anybody.

ROSOLOWSKI:

1:41:50

I wanted to ask you about the presidents, and I don’t know how much contact you had with, but just sort of an impression of the differences in administrative styles between the different presidents and kind of the marks they’ve left. I’ve heard it said that—

STRONG:

1:42:09.4 Don’t be complimentary—(laughter) Go ahead and tell me what you’ve heard.

ROSOLOWSKI:

1:42:14.1

I’m not looking for gossip, but an evaluation. I’ve heard it said that MD Anderson has kind of had the president who was needed at the particular moment, and that can always have its up sides and down sides, so I’m just wondering what your impression is of the individuals who have been president during the time you’ve been here.

STRONG:

1:42:36

Well, I’ve had a relationship with all of them. R. Lee Clark was a person who made decisions quickly—typical surgeon. He was also a person who was very loyal, so the people that started with him, in general he was very supportive and very loyal. He was obviously very focused on the patient care. We had terrific things like radiation—fabulous radiation therapy and things like that that were just terrific. He did not focus as much on the more basic side of research. That was certainly always kind of recognized as a weaker part of the institution, but he was interested in building a place to take care of Texas cancer patients and was very effective, but he did things kind of in a surgical manner in terms of making decisions and such. LaMaistre was very different than that. First of all, he didn’t come from a cancer background at all, and he came from much more the prevention in the pulmonary disease and so forth—a public health, et cetera background, which was a very different background than Clark. Although I certainly knew him I probably didn’t interact with him a great deal. From my perspective, which may be totally wrong from others, he didn’t really interact as much with the faculty. He lived in a little bit different world. It really worked out well. We grew, continued to recruit good people, and so forth. There was a period, and I can’t really define the dates, and that’s probably just as well. There was a period when the—not the patient care in terms of the “Did you get treated with the right treatment?” but patient care in terms of the caring that we’re known for now, when it was not so near the surface—mid-eighties or early nineties maybe. I had friends who wouldn’t consider coming to Anderson after they had been here with their brother, or sister, or friend, or something. They had seen people wait for thirteen hours to get an x-ray at eleven o’clock at night. Again, I wouldn’t want to emphasize this, but there were some difficult times, and when Mendelsohn came I don’t know how much of it was him alone or others, but that really changed. I think we may have hired more people to help with training and help with being the—I can’t remember the word for the person that sort of helps you navigate—the patient navigator—I think that’s the word. We just developed processes that were so much more effective in that area. Mendelsohn’s early years here, you know he really went around the institution, got to know people, places, things. Seemed to want to know and be involved, and it was very helpful. He was hands on involved in a lot of the recruitments and wanted to bring in good people. Again, I wouldn’t put all of this in, but as he evolved in that position, as often happens with senior administrators, he became a little more isolated with his senior administration, but I think he was really the right person when he came in to help us make a correction, so to speak.

ROSOLOWSKI:

1:47:48

That was a really difficult time, when the HMOs were—it was a struggle, and everyone has talked about that period of time under Charles LeMaistre [MD [Oral History Interview]]as being a real trauma period.

STRONG:

1:48:00

It was bad. It was a very bad time.

STRONG:

1:48:03

Both internal—inside departments, and now with the interface, too, with patients, it was really, really difficult. Can I ask you in our last moments about your impressions about Dr. [Ronald] DePinho and how he’s come in? I know it’s a little bit difficult for you to—and you can address what you’d like to address and not address what you don’t want to address, but certainly he brings a new image to the institution.

STRONG:

1:48:33

Yes, he’s extremely strong as a basic scientist. He’s very accomplished himself as a member of the national academy and so forth. He is very anxious to sort of raise the bar in basic science at MD Anderson. He can be a very inspiring leader. He’s very inspirational to listen to. His goals are things that you can’t help but admire him and aspire to. I think there is a little bit of concern about rapidly changing things at MD Anderson, and a lot of the things he wants to do are great, but I think that we have to be sure we remember our mission of taking care of cancer patients, and obviously if we are successful in developing some new therapies for cancer that will give us a chance to be extremely successful at that, but it think we have to be sure that we remember it’s not only the drugs and that there is a whole attitude of treating the family and all that sort of thing. He has never been and doesn’t really claim to be a clinician, and I think there has been concern a bit that that was an area where he expected everything to just go along fine. We were known for being great at that, and we should just keep on doing what we were doing and not looking at areas where there really might need to be some attention. I mean there is still very much of a hangover from 2008, when all the clinical faculty were asked to see many more patients and not to travel and lost some of their more academic research type time in order to help meet the institutions financial needs, and you can’t just now say, “Ho-hum, that’s the new normal and we’re going to have to work even harder this year.” So I have a lot of concerns about that.

ROSOLOWSKI:

1:51:23

How do you feel that your area of genetics and genetic counseling and all the areas that your work touches—how does that dovetail with some of the missions that Dr. DePinho has identified—and what support do you think will come down the line from that?

STRONG:

1:51:46.1

I don’t know the answer to that. His primary focus is developing drugs that will target genetic changes in the tumor—that will directly target the tumor so that you, ideally, end up with greatly reduced side effects and very scientific targeting of the tumor cells. Now to do that he sees this broad genomic analysis, so you need to know all the genetic changes in the tumor. That’s not quite possible because the tumor is constantly changing itself. Then you have to know what the normal tissue is, too, of course, so you know what has changed in the tumor. Now to the—so he is focused on the end point of treating the tumor. My end points are more focused on the normal genome that may carry genetic predisposition and how can we intervene at that point in time before we have this tumor with all of its genetic end points. So they’re different points of intervention. They’re not unrelated. If you’re sequencing the tumor genome you’re getting the normal genome as well. In theory, we could get a lot of feedback from the genomic work that’s done from tumor in normal pairs because we would just like to look at the normal part of it. Whether that will actually work that way or not I don’t know. There also is a lot of—or some increasing interest in the normal genome may have genes that not only affect whether you get cancer, but how you respond to different treatments, and so there is that interest in characterizing the normal genome; how you respond to treatment, kind of what your prognosis is—those kinds of things. Whether you would respond better to treatment A or treatment B based on your genome make up. So there are those points, but right now what I see, with the tremendous focus on the tumor genome, I don’t see our area getting a lot of benefit. Maybe it will in the long run. I don’t see us being considered irrelevant, but I don’t see it being some sort of a windfall. I do see, if we can work out this PreCare business with the genetic information and the ability then to sort of screen all the new incoming patients, so to speak, I think that could provide a great deal more activity in the genetic testing, genetic counseling, genetic intervention opportunities.

ROSOLOWSKI:

1:55:24.3

Well, thank you very much. We’ve run a little bit over today so I want to make sure that I don’t take too much of your time. Thank you very much for today.

STRONG:

1:55:34.2

I may have to edit out some of the things that I—

ROSOLOWSKI:

1:55:38

It’s five minutes after twelve.

STRONG:

1:55:39.2

I don’t want to have it end on a negative—

1:55:42.5 (End of Audio Session Two)

a MDA-RML_Strong, Louise

Index

A Amos, Christopher II-20, II-24 Anderson, David I-31, II-13, II-32 aniridia I-22, I-23, I-24 Australia II-8 autism II-26 B Bast, Robert "Bob" II-16 Becker, Frederick II-16, II-17 Bleyer, Archie II-17 bone tumors I-37 brain tumors I-20, I-37, II-9 BRCA1 gene II-13 breast cancer I-24, I-31, I-33, II-12, II-13, II-16, II-18, II-26 C Canada I-37, I-41, II-2, II-5 cancer genetics II-6, II-12, II-17, II-24, II-28 cardiac disease II-11 cardiovascular disease II-26 cardiovascular genetics II-28 childhood cancer survivors I-20, II-9 childhood tumors I-25 chromosome abnormalities I-11, I-24 chromosome analysis I-3, I-15, I-21 Clark, R. Lee II-33, II-37 CPT code II-4, II-6 cytogenetics I-11, I-21, I-25, I-33, II-17 D deleterious mutations II-25 DePinho, Ronald II-38, II-39 Down syndrome I-2, I-11 E embryo I-13 F fetus I-13 fibroblasts I-27, I-28 Fraumeni, Joseph I-24, I-25, I-26, I-29, I-31, II-1, II-5, II-7, II-8, II-11 Friend, Stephen I-28 G Galveston Medical School I-10 genetic counselors II-15, II-17, II-18, II-19, II-20, II-21, II-28 genetic discrimination II-13, II-14 genetic epidemiology I-21, I-32 genome sequencing II-25 genomics era II-11 Gilman, Alfred "Al" I-38 H Hansen, Marc I-31, II-17 Hecht, Jacqueline "Jackie" II-17 HeLa cells I-27 Hickey, Robert "Bob" II-31 Houston, Deborah "Debbie" II-23 Houstonian I-6 Human Risk Assessment subcommittee II-30 hypercholesterolemia II-26 I insurance companies II-4, II-5 J Jewish community II-14 K Killam, Radcliffe I-1, II-29, II-32 Knudson, Alfred I-4, I-5, I-6, I-15, I-16, I-19, II-7, II-8 L Ladies Home Journal II-12 LaMaistre, Charles A. I-38, II-37 leukemia cells I-2 Li, Fred I-28 Li-Fraumeni syndrome I-24, I-25, I-26, I-31, II-1, II-5, II-7 Lynch, Patrick II-18, II-20 M MD Anderson Cancer Center I-1, II-27 Medicaid II-4 Medicare II-4 Mendelian genetics I-14 Mendelsohn, John II-16, II-37 Mills, Gordon II-15, II-16, II-18 Molecular Biology of the Cell I-17 Mormon I-40 mutagenic events II-7, II-8 N National Cancer Advisory Board II-30, II-31 National Cancer Institute I-24, II-3 neuroblastoma I-16 Newsweek II-12 O obesity II-11 ophthalmology I-20 ovarian cancer II-13, II-15, II-16 P p53 gene I-22, I-28, I-37, II-25 p53 germ line mutations II-2 Peterson, Susan II-15, II-20 post-doctoral fellowship I-3, I-4 PreCare II-22, II-23, II-24, II-29, II-39 predisposing mutation II-7 punch biopsies I-27 punctate lesions I-13 R retinoblastoma I-2, I-3, I-4, I-13, I-14, I-15, I-16, I-20, I-22, I-24, I-25, I-26, I-40, II-7, II-8, II-9, II-30 Robison, Leslie "Les" II-9 S Salt Lake City I-40 sarcomas I-20, I-24, I-27, I-37, I-39, I-40, II-9 schizophrenia II-26 Science I-30, I-31 Siciliano, Michael II-17 Stanford University I-9, II-6 T Texan I-6 Time Magazine I-15 toxicology testing II-30 translational research I-35, I-36 two-hit model I-13, I-15, I-16, I-22, II-7 U University of Michigan II-3, II-6 University of Texas I-1, I-7, I-10, II-34 W Wilms’ tumor I-16, I-22, I-23, I-24, II-9 Z zygote I-13