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#136 Linda Robinson on the History of Genetic Counseling

by Kira Dineen
December 4th 2020

Our profession has evolved over the last 50 years from a small dedicated group of genetic counselors to over 5,000 individuals in the United States, with sist... More

how is it that we find ourselves surrounded by such complexity? Such elements jeans you and me are all made of DNA were all made of the same. Hello you're listening to DNA today a genetics podcast and radio show. I'm your host character on the show. I explore genetics and how it impacts our health through conversations with leaders in genetics. These are genetic counselors like on today's episode researchers, doctors and patient advocates. My guest is linda Robinson, a retired genetic counselor who's had a very impressive career. She worked primarily in prenatal and cancer roles at U. C. L. A. University of texas Southwestern Medical Center and the California Department of health linda. Retired as an assistant director of cancer genetics at the University of texas Southwestern Medical Center and is currently a consultant grant writer there. She's a long list of publications grants awards.

She has been a very active member of the National Society of Genetic counselors on countless committees. Currently she is in the late career sig our profession and its professional organization has evolved the last 50 years from a small dedicated group of genetic counselors to over 5000 individuals in the United States. We hit that landmark In 2019 with sister organizations in Canada europe Australia. Just as the field of genetics has evolved over the last 40 years. So has the National Society of Genetic counselors. We call N. S. G. C. And genetic counselors Overall In today's episode We're going to highlight what hot topics, historical accomplishments, challenges and barriers and opportunities during the last 50 years of genetic counseling. Thanks so much linda for coming on the show. I'm really excited to dive into the history of genetic counseling. I've had a lot of genetic counseling episodes but have never really talked about where Genet Council has started and how far we've come. How far back does the roots of genetic counseling start? So, to give you a little bit of a history background, um there was a biological and genetic revolution in the 1960s and you have to remember, it was just 1956 that we learned that humans had 46 chromosomes.

So by the mid 1950s, there was only about 20 hospitals and laboratories in the country that were classified as genetic counseling centers. And 10 years later that numbered more than tripled to about 100. So there was a new recognition at this time of genetic disease and this was the time when the first catalog of genetic diseases was published or what genetic counselors know as omen or the online dandelion inheritance of man, but it wasn't online at the time. It was just a big book. Um and it was the time when David Smith published the first book on recognizable patterns of human malformation. Um so it's an exciting time when genetic syndromes were just starting to be recognized. And prenatal diagnosis was just starting as well in 1966. So there was a need to translate all this new genetic information so a patient could understand it. Um So initially it was just a group of physicians that were doing genetic counseling and they were trying to address the questions patients were asking is why did this happen?

Why does my child have this birth defect? And now with the advances that were happening in the 1960s and early 70s, um physicians could give facts and opinions onto why that birth defect happened and there really wasn't a specialty in genetics at the time. Um Most of the physicians that were calling themselves genetic counselors had trained in pediatrics and gynecology or basic PhD laboratory scientists. Um It didn't really change until Melissa Rector came along and she was a professor at Sarah Lawrence College in new york and she proposed a master's program in genetic counseling and she thought the unique combination of genetic expertise counseling, skills, education techniques could be associated with this degree. So she started the Sarah Lawrence Genetic Counseling Program in 1969 and within a few years there were programs at the University of Pittsburgh Red Curse, the University of California in Berkeley and in Irvine.

And so you had these newly graduated genetic counselors that could now assist the few 100 physicians in the country that we're doing genetic counselors. Um and there was a growing number of referrals. So these genetic counselors were welcomed into the community. And so it really took the beginning of genetic testing of like now we have so much genetic testing, it's really overwhelming when you think about it. But it took that first type of genetic testing and understanding that the genetics of some diseases to say, oh now we need professionals to start explaining this to patients because physicians weren't used to this. It was really like the dawn of using genetics in medicine as opposed to just the research side. So this is so it started with prenatal, it sounds like and being able to serve these patients. What did a genetic counseling role look like? Like what need did it serve for those patients and helping the other health care providers?

So the initial need was just to start taking family histories and understanding what was involved with the history because a lot of the genetic syndromes hadn't been figured out at the time. Um, fragile X for an example, you really needed to look at hundreds and hundreds of family histories to understand the pattern of inheritance. So that was the main role of genetic counselors at that time. Um, the only real genetic testing that was being done was chromosomes. And they were pretty bad, very low resolution chromosomes that you would do on blood, um or amniocentesis and the chromosomes back then, I'm trying to think of what like when we started with chromosomes, we didn't have banding. So it was just like solid banning. So you look at chromosome and there was no banding to it to see specifics. You could just count numbers of chromosomes. So we've we've come a long way inside of genetics as well. Very much so the first chromosomes, they would be very impressed that they could see 100 bands.

Um You know, we have to think interface side of genetics where we're looking at even fish probes on these expanded chromosomes That really didn't come about until 1989. So the beginning it was a little rough. We could tell trisomy 21 trisomy 18. But that was about it. You could count them. And then beyond that, it was like had to wait for those advances. And also that the timing of genetics back then to get a genetic result was months and months. Um It wasn't days and hours that we have today. And in terms of the history of the term genetic counseling, I mean, who coined this? And how was the title decided for than genetic counselors? Were there other terms that were in the running because there's a lot of ways to really describe this field, and especially at this time, it was all clinical based. I mean, we have so many different jobs now, but at the time period we're talking about, I mean, how did we come to this genetic counseling term? So the term was actually coined by Sheldon Reid Um in 1947.

And he actually published the first book counseling in medical genetics and the book was published in 1955. Um and he ended up being one of the first presidents of the american society of human genetics. Um Through the university of Minnesota and what he described genetic counseling that was was giving advice to patients about genetic disease. And at the time this was really focused on Huntington's disease, mental retardation and cleft lip and cleft palate. And he liked the term genetic counseling because the other term at the time that was being tossed around was genetic hygiene. You gotta remember what year it was, it was 1947, right after World War II and the term being thrown around in nazi Germany was racial hygiene. So you know we could have been genetic hygienist. You kind of think of where that went. So physicians started calling themselves genetic counselors after Sheldon read published his book on coining the term genetic counseling.

Um So when the new masters trained genetic counselor started coming out of the programs a lot of the physicians didn't want the term genetic counselor because they were the genetic counselor. And so they started calling genetic counselors, genetic associates, genetic assistance. And it was really up until 1984 that a quarter of all genetic counselors were still called a genetic associate. And a lot of that was program based. Um I was an undergraduate um at U. C. Irvine at the time and they had a genetic counseling program and everyone there was called a genetic associate. So there's really no difference in the field at that time of not everybody was going by genetic counselor. It took some time for the field to figure out really what it was. I didn't realize that some people were calling themselves that that early and some of it is because that's what their degree conferred them to be called. The degree was you are genetic associate, not a genetic counselor.

And we talked a little bit about how these jobs looks like the beginning of starting in prenatal and working with other physicians and healthcare providers and what the genetic testing looked like. But it also sounds like from me talking to some genetic counselors that were around for the start of the field, that they had to create their own jobs and a lot of senses and go to places and say, you need me. And this is why um, do you think that, you know, this was maybe one of the challenges that genetic counselors faced as the profession was really getting its footing And it really was a big challenge for the 1st 10 years. Um, there weren't a lot of jobs out there. So you just had to go to where you could find a job. And then nobody really knew what a genetic counselor was. My own example, even in 1990, coming to Texas to start up prenatal die. Um, to start a cancer genetics program was actually 1998 and I was interviewed and the head of the cancer center said, I don't know what a genetic counselor is, but I know I need one and I like that quote, that's that's very powerful.

Um but for years and I'd have to introduce myself, my name is linda Robinson, I'm a genetic counselor and this is what I do. So nobody really knew what we did. Um genetic counselors had to be very creative. You know, if there's only funding for a part time job, they would work in the cider genetics lab and new genetic counseling, anything to try to get a foot in the door and establish themselves to develop a program. And so one major really change in a way that the field started advancing is in 1979 when sGC National Psychogenic Counselors was founded, why was this so instrumental in the growth of the profession of really moving it forward book. Wanna gave a connection for genetic counselors. You know, we felt kind of all alone, you may be the only genetic counselor in your state or in your city. And MsG C gave us an opportunity to network and to talk to other people around the country that we're in a similar situation. Um and that enabled us to share information.

It was all of us working together whether it was developing a counseling tools or a presentation that we would share or ways to market and expand your practice. It also gave us a way to continue our education, genetics was advancing so rapidly at the time that it was hard to keep up without NSG C you needed to keep learning new skills, you know, to be able to do the new testing that was coming out when I went to school, genomic testing wasn't even thought of. And so everything that came up knew you had to go back and learn about it and who are some of the key players in this formation. I mean, we talked about who started Sarah Lawrence, but this is also a major point in having the field be expanding and as you're saying, connecting and having that really important of continuing education, especially imagine before the dawn of the internet to be able to get together and say, wow, this is all the new material. Who were the people that started in sGC and and really got it going so that all these people could be connected.

Okay. We would always joke as if there was a mount Rushmore for genetic counselors, who would you put on it? The first person would definitely be Audrey Hi miller, our first msg see president um, and trying to get us all together. Um, Beverly Rolnick, our second president, um, and her work with the March of dimes was instrumental to NSG C N S G C was a grassroots organization with no money. Um, Beverly roll neck kind of weaved with the March of dimes. Initially we had our initial meetings with the March of dimes. March of dimes paid the postage to mail out our newsletter perspectives. So Beverly was super important um and walker um she was the first a BgC president, the american border genetic counseling but she was active on the west coast. So most of the formation of NSG C started with the Sarah Lawrence group, but ann walker kind of brought in the rest of the country other than the East coast.

Um joan marks definitely long term director of Sarah Lawrence. Um Deborah AMP you, she was the first journal editor and the first perspective editor. Um and see more kessler. He brought in a lot of articles and publications on the psychological aspect of genetics, but one of the main people goes back to Melissa Rittner. She was the professor at Sarah Lawrence that proposed the program in the first place and I found her very fascinating, especially coming from where she came at Sarah Lawrence prior to working at Sarah Lawrence in World War Two, she was actually a riveter. I like Rosie the riveter for World War Two. It's exciting that when we talk about the history of genetic counseling us both being from Sarah Lawrence College of really a lot started there. I mean that's for genetic counseling really was born in terms of genetic counselors as opposed to genetic counseling started before as we were talking about earlier and with NSG C. Um being at last year's N.

S. G. C. Um in Salt Lake City of hearing a little bit about the history as sGC was celebrating 40 years? I think I'm getting that right. Um and Hearing that when it was starting out dudes were something like $10. Am I getting that right? Yes. And actually NSG C started To get the group together. They needed some money and everybody pitched in $10 to start the group Which I feel like those people should be on some plaque somewhere to be like you started on this you see with the $10 you had at the time and and just being so exciting and um as we look back at the last you know, 40 50 years since the profession started um with Sarah Lawrence and NSG C. I mean how has it evolved since then of of what was kind of the next phase of, you know, starting these programs starting NSG see what was the next big maybe push in the field or where we started to see it start to grow much more. Um well one of the first things was certification, which was pretty amazing for a young profession that our society started in 1979.

And the first certification exam was offered in 1981 that helped validate the profession because we had a test to prove our knowledge and to prove to the other medical community that we really didn't know what we were talking about? Um The other thing that kind of evolved with our profession is our education. Remember our education meeting started as a one day attachment to the March of Dimes meeting and now it's grown into a four day meeting with 3000 people coming with vendors. Um and just the extensive education that's available that has evolved and moved our profession forward. But the training programs are amazing. There's been a few that have kind of come and gone um usually for financial reasons But to go from Sarah Lawrence to now 45 programs in the US and 40 in other countries is amazing and just sheer numbers, we've gone from, You know, nothing in 19 69 to over 5000 certified counselors in the United States today, but 7000 genetic counselors worldwide.

So I think it's become an established profession and we're no longer having to, you know, explain ourselves what a genetic counselor is anymore. And I think we've seen that even in the last few years of me not being in the field all terribly long, but having to explain less and less what a genetic counselor is to people when I'm meeting them. Um I think back when I was in high school said I want to be a genetic counselor like well what what is that? Um and now it's becoming much more. Um I don't get, oh you're gonna work with old people, you know, not a geriatric counselor and having to explain those terms. Um I think it's exciting to hear just where we've come and looking at some major advancements in terms of genetic research and testing. Is there anything that comes to mind? We talked about the site of genetics and being able to actually look at chromosomes and eventually the banding pattern on that. Is there anything else that comes to mind in terms of maybe breaking research or testing that you're like, wow. Yes. That was a really monumental time in genetic counseling. Um I can think of four big major advances in genetics.

Um the first was in the mid 1980s with maternal serum AFP screening because before this, the only type of genetic or birth defects screening programs in the country was newborn screening and that was run by nurses. Um and in 1986, the state of California started a population screening program um to screen every pregnant women in the state, my serum A. F. P. Um And that became the standard for the country. And literally overnight everybody had to have a genetic counselor to start an A. F. P. Screening program. So we needed suddenly a ton more genetic counselors, ton more genetic counselors. That was the first boom of genetic counseling. Um And it was an explosion that we didn't see really happen again into the mid 19 nineties when they announced the discovery of Greco one and BRCA two. And that was so exciting because it took something like 20 years of research with Mary Claire King and others to be able to get to that point. That was that must have been such an exciting day when you heard about this.

And it was and it was just like the beginning of genetics where we had been collecting families, telling them, you know, we don't know what it is, we think it's genetic and trying to do linkage and then having it all come to fruition. Um And now half of the genetic counselors practicing in the United States are cancer genetic counselors And that wouldn't have happened without the discovery of the Bracco one and BRCA two genes. So it's surprising to hear that a lot of what we've talked about is prenatal and really starting with prenatal but now we have more cancer genetic counselors than prenatal genetic counselors. That's right, wow. And I think the next big change we're seeing now is the result of the human genome project. You know, that went on for 13 years from 1990 to 2003. And it had a lot of you know side effects in the sense that genetic counselors were now propelled into research and we really didn't see genetic counselors doing a lot of research before that time. Um And it also set the stage for the next explosion we're seeing now with genomic testing and the need for more genetic counselors to help explain even direct to consumer testing, whole genome testing and that's been an exciting time.

But an interesting time was 1985 with the O. J. Simpson trial. So nobody really knew what genetics were kind of in the public. Well after that trial everybody became an armchair genetic specialist. Everybody knew about DNA. So I think that event really brought genetic testing just to the forefront and when I think of it in my lifetime and in just the years that I've I've been active for me, Angelina Jolie was really like a big change in terms of public awareness of I when talking to people about genetic counseling and say oh well did you hear about Angelina's Angelina Jolie's op dead like that that's what I'm doing and that's what I'm studying and so she really changed public awareness in such a beautiful way. Um how did you see this being a practicing gent counselor like at this time of of the the change in just how many people were referrals? I mean I heard from some joint councils that it was really like overnight that they had all of these referrals coming in especially for the cancer realm.

Um how what is your perspective on this and just how much it elevated the career? Well I remember that day very distinctly because I was driving into work and I heard about it on the radio. Um and I knew that that would be one of the most important days for genetic counselors and just in regards to awareness and before 8:00 AM, I had already written a press release about the importance of genetic counseling related to the Angelina Jolie's story. And by six o'clock that night I had done four tv interviews and a radio interview and that was on top of what my surgeons were doing at the hospital and I wasn't the only one doing this type of outreach. Every genetic counselor in the country was fielded with media reports and media request. And it was a once in a lifetime opportunity to get the word of genetic counseling out there. But more importantly, um the story transcended all cultural backgrounds. Um and at the time I was working in a county clinic providing cancer genetic counseling to underserved and minority patients.

And there were many times I look at my patients and they had this blank look because I was trying to explain B. R. C. A. Gene testing and why it was important to them. And I'd use the example of Angelina Jolie and instantly my patients understood because they knew her story and I'd never seen that before how one person could affect so many people around the world. And I'm sure it also helped to normalize of of being able to explain is fantastic and it moves your conversation along. But also it's like, well this happened. Angelina Jolie and you know, maybe this is the case for your family as well and there's someone that you can relate to on top of that was educating and luckily as far as I know she was getting the information right because it probably would have been a nightmare for genetic counselors if Angelina Jolie's pieces had inaccurate information. So that was probably a sigh of relief for you. No, it was it was it was just kind of like a gift from heaven, you know. Uh is the first time we could really get out there and talk about genetic counseling And looking for the future.

What do you think is on the horizon for the field? We've been talking about the last 50 years. I could ask about the next 50 years. That may be too big of a question to answer. But how about the next five years? What do you what do you see really being maybe the next big push or really where the field is headed? Well, I think we're going to continue to see further specialization in our profession. But at the same time, I see genetic counselors having to go back to become more generalist. And this is all a result of the whole genome, whole genome sequencing. Because we're now going to be challenged with, you know, this type of genetic testing that will reveal all different types of mutations they come in for cancer testing. Um and then you find they have a cystic fibrosis gene. Um I think we're gonna see far more overlap than we've ever seen before. Um I think in the next five years you're gonna see. I predict all the states who have licensure within five years. I think it's a snowball effect. Now that we've hit over, half of the state's becoming licensed, that's going to be a big thing.

I think we're gonna see more training that's virtual. Um Like simulation training. Um Computerized training, whether it be your graduate degree, you're taking classes from all over the country. And we've seen that a little bit with um a couple programs that are online and then you find a clinical rotation that's close to you in different aspects and that's that's been something new in in the field last couple years. And I think that's setting the stage for where healthcare will go in the next 50 years. I think all of healthcare will shift to more virtual experience. And genetic counselors are going to have to be ready for that. So being trained in a virtual experience, I think will set the stage for how you're going to have to deliver health care. Um genetics will become more commonplace. Um When I started, most people had no idea what amniocentesis is or what a chromosome was. Now that's pretty standard language. I think more people will have a better baseline knowledge of genetics. Um But the counselors are going to be spending all their time dealing with abnormal results and not so much the screening I think that will all be automated by technology.

It's exciting to see some of the conversations that took place at the last N. S. G. C. We're a lot about telehealth but also um online tools that are like chat boxes and in um ways that patients can talk and get information with this artificial technology and I can see how that can be implemented and having to have general counsel to be a part of that process. So we make sure we get it right because if that information that the patient is is receiving isn't clear then it's not doing the job. And I can't imagine it replacing genetic counseling but really just being a tool to help more people and we don't have enough genetic counselors to meet patient demand. And it seems like that's one way to start tackling that issue. And technology is definitely going to change even from the basics of having patients put their pedigree online and then having artificial intelligence help to analyze that pedigree to give the genetic counselors a head start.

Well I think that's very very well said in a lot of insight that we've had on this episode of just exploring the history and looking for the future. I think it's really important to understand like where we've come from and have an appreciation of that and to understand more of where we're going and how we can be achieving these goals and and really at the end of the day helping the public understand genetics. Um, very exciting that you've been part of NSG C for so many years and a current project you've been working on is having a virtual timeline of a lot of what we've talked about at the counseling profession. Um, where can people find this? So it will be available on the N S G C website and it will be a great interactive timeline where you'll be able to click on an event, but then also get pictures the article, the reference wherever we obtain that information. Very exciting for people to be able to consume the content in that virtual way and they can listen to this on the audio side. So really appreciate hearing all of your insight and uh, we'll have to have you back on to explore, you know, the next round of looking back and Um, Jerry Council is not going anywhere.

So we're definitely a profession that's really expanding and it's really interesting to be able to look back on how far we've come in the last 50 years. So thank you so much. Well, thank you, Be sure to go check out the virtual timeline of the genetic counseling profession on NSG C dot org. Again, that's NSG C dot org. If you enjoy this show, please rate and review in your podcast app. Really appreciate you taking the time to do that and help elevate the show. If you're on twitter, you can follow me at DNA podcast instagram at DNA radio and any questions for myself for linda can be sent in to info at DNA podcast dot com. We love hearing your questions, comments, concerns everything, so you can email in info at DNA podcast dot com. Everything we talked about is on DNA podcast dot com. The show notes for this episode. Extra links that we talk about pictures, videos, so much extra content over at DNA podcast dot com. Have over 100 episodes on their interviews just like this one. Thanks for listening and join me next time to learn discover new advances in the world of DNA.

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#136 Linda Robinson on the History of Genetic Counseling
#136 Linda Robinson on the History of Genetic Counseling
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