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Cathy Wicklund on the Role of Genetic Counselors in the Age of Genomic Testing

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Cathy Wicklund
Director, graduate program in genetic counseling
Northwestern University
Name: Cathy Wicklund
 
Age: 39
 
Position: Director, graduate program in genetic counseling, Northwestern University, since Aug. 2007;
Associate director, graduate program in genetic counseling, 2006-2007;
Assistant professor, department of obstetrics and gynecology, Northwestern University, since 2006;
President, National Society of Genetic Counselors, 2007.
 
Experience and Education: Director of prenatal genetic counseling services, University of Texas Medical School, department of obstetrics, gynecology and reproductive sciences, 1996-2006;
Co-director, University of Texas graduate program in genetic counseling, 2000-2006;
Genetic counselor, Cooper Hospital, New Jersey, 1993-1996;
MS in genetic counseling, University of Texas Graduate School in Biomedical Sciences, Houston, 1993;
BS in biology, University of Wisconsin-River Falls, 1991.
 

 
As director of the graduate program in genetic counseling at Northwestern University and current president of the National Society of Genetic Counselors, Cathy Wicklund has been keeping an eye on companies like 23andMe, Decode Genetics, and Navigenics who offer whole-genome scans that may reveal increased risks to certain diseases. In the future, these and others firms are likely to employ DNA sequencing technologies as well. In Sequence asked Wicklund last week what role genetic counselors will play in the future in helping people decide how useful genomic information is going to be for them, and what to do with it all.
 
What is the role of genetic counselors today?
 
Genetic counselors are Masters-level trained healthcare providers. They usually have undergraduate degrees in subjects like biology, chemistry, genetics, psychology, and then they get a Masters in genetic counseling. There are about 30 programs across the United States and Canada that offer this degree. Post-graduation, they are board-certified by our credentialing body, which is the American Board of Genetic Counselors.
 
Historically, [genetic counseling] has evolved from more reproductive genetics, in the prenatal setting and also in the pediatric setting, to being involved in adult cancer, neurogenetics, cardiovascular disease, and [other diseases].
 
One common thing that always is on the forefront of any kind of genetic test is talking about risk. And genetic counselors have a lot of training in talking about risk. We have been successful in expanding into many different roles, and talking about many different types of risk. It might be a risk to your baby, [or it might be] risks [related to] a medication you are taking. It might be a risk to develop Huntington’s [disease], or a risk to have breast or ovarian cancer, based on a genetic test and your family history.
 
We also deal a lot with ambiguity and grey [areas], things that are not always clear-cut. So we really have that skill set that is necessary to take information that simply doesn’t give you a yes-or-no answer, and actually be able to explain it to somebody, and try to figure out, first of all, ‘Do people even want this information, would it be useful for them?’ And then, if they do go forward with testing, trying to help them decipher what the results actually mean. And then, of course, [to explain] what are the kinds of things you might be able to do to try to decrease your risk.
 
Where do you see the role for genetic counselors with regard to the whole-genome testing offered by 23andMe, Decode, Navigenics, and others?
 
Remember, some of these companies actually have genetic counselors on staff. Some will actually offer genetic counseling by phone before they have the test. Some will, if it becomes more complicated and they think it’s deserving of a face-to-face visit, refer to a genetic counselor.
 
I think it will depend on the consumer. Some people are going to look at this and say, ‘You know what, I am not quite sure I want this,’ or, ‘I am not quite sure what I am going to get from this.’ I think that people are gong to seek out genetic counselors or go to their physician and say, ‘Can you help me?’, and then the physician might refer them to a genetic counselor. I can see us being involved even before anybody gets the test, and then I also can see consumers who go on and say, ‘This is what I want to do,’ and once they get the results, they may have questions. It will probably depend on the consumer, how much background information they have, how certain they are that this is going to be beneficial to them.
 
One of the first things to do is just look at your family history. A good family history can also tell you if you have risks for some of these things as well. Your Dad had diabetes, and you might have an increased risk, too. 
 
I think, too, [that] we don’t understand, necessarily, especially if you are going to sequence your entire genome, what it means. So you do get information that’s very unclear, that’s not as simple as ‘Yes, you are going get this’, or, ‘No, you are not going to get this.’ There is a lot of probability, and then there is a lot of, ‘We don’t know what that means.’ So I think as a consumer, you need to be prepared for that, the limitations that go along with it.
 
Do you see your profession changing over the next few years as a result of these new tests?
 
We have been talking a lot about this. What we are doing as a profession is looking at the skill sets that we have, of which a lot is based on communication. The background in genetics, combined with the communication skills, risk assessment, risk communication, along with the psychosocial support that we have, a lot of those components are going to be key in the future, too. I think the basic skill sets that we have are going transfer nicely into the future.
 
Maybe the emphasis will be more on [seeing patients] before they decide to have testing, or more of our emphasis will turn to post-testing. It’s hard to say. I think it will be interesting to see how consumers feel about this information. Do they see value in it, and what will the actual uptake of this be? I don’t think anybody knows right now how interested people are really going to be in this.
 
Huntington’s disease is a good example: [Researchers] did surveys of people with family histories [and asked], ‘Would you be interested in having this tested if it was available?’ and many people said ‘Yes, yes, yes, yes, yes.’ But then, after it was available and they really sat down and thought about it, many people did not want to have it. So even if you try to do a market analysis, thinking about who would really be interested, until it’s out there, it’s really hard for us to be able to predict the uptake of that.
 
I think genetic counselors are going to work really closely with physicians, as we always do already, but I think that we are going to even work more closely with primary care providers and family practitioners, because they might be faced with somebody coming in and saying, ‘Help me figure out what this means.’ And we need to be there for the physicians who need us. Some are very comfortable in dealing with this, and some are not.
 
So far, genetic counselors seem to have dealt with serious genetic risks, like cancer or birth abnormalities. Do you think in the future, you will also be involved in explaining the “fun genetics” or the less dramatic health risks?
 
I tend to think that we will probably stay more with disease-causing conditions. I see us moving more into the chronic complex diseases, like heart disease, and diabetes, and high blood pressure, and those sorts of things. The nutragenomics, or athlete performance, it’s hard to say. Historically, we just have not gone in that direction. We really tend, as a profession, to be more interested in health-related outcome, and improving health. If there is a component that would improve health, I think that that could be valuable.
 
I think there are some things, though, that would be more kind of like pop-culture or things not associated with improving health that I don’t foresee us, at least in the immediate future, moving into. I think there is a need for us elsewhere.
 
Do you think there is going to be an increasing demand for genetic counselors over the next five to 10 years?
 
Yes, and we have seen that already. Every year, our graduates are very successful in finding positions. There is a demand for all kinds of healthcare providers who have an expertise in genetics, whether it be nurses, or genetic counselors, or medical geneticists. I think there is also going to be a demand for physicians in general to become more knowledgeable. I think we are going to have to see it both ways, general practitioners and family practitioners to move some components of genetics more mainstream, and then also keep on training people who are more specialized in genetics as well.
 
How are you going to keep up with training genetic counselors? There are only a few thousand genetic counselors licensed in the US, and board-certification exams only take place every two years.
 
 [The American Board of Genetic Counselors is] considering going to a yearly credentialing exam. Board-certification is really not one of the limiting factors. We definitely need that for quality and public protection. The National Society of Genetic Counselors, plus program directors, and the American Board of Genetic Counselors, are all very aware of thinking about how we train genetic counselors, how we can keep up with the demand, and we have definitely begun those conversations. There has been a significant increase in the number of programs [already]. When I applied to programs in 1991, there were about 16, and now there are a few over 30, so they have doubled in 16 years. Almost every year, a new program comes into existence.
 
And what we really need to work on in order to continue to see the profession grow, and also reduce barriers for patients to see genetic counselors, is for genetic counselors to be recognized as healthcare providers that can also bill for their services. Right now, the Centers for Medicare and Medicaid Services don’t recognize genetic counselors as recognized providers, so we have limitations in our billing practices. I think that’s one of the barriers for patients in the sense of whether or not their insurance covers genetic counseling along with the genetic testing. Once we can work on that issue, I think we are going to see a lot of growth. We will see growth in programs, hospitals hiring more genetic counselors, and training programs being able to train more genetic counselors.
 
Do you see any competition from computer-generated analyses that these companies provide?
 
Like clinical decision support? I think everybody is different. I think there are some consumers that are going to be perfectly fine with being on a computer, and having the computer take them through clinical decision-making. But I think everybody communicates and learns in different ways and needs different kinds of support. I view it more as a complement to what we are doing that could enhance what we are doing. It could be fine for some consumers, but you know, there is nothing like a face-to-face visit, either.
 
I think a lot of people still want to be able to explore what it means for them in a more interactive setting, or even teleconference or telemedicine, however that might be. Where some people learn by using a computer, some people don’t; that just doesn’t work for them. And I think what is nice about meeting somebody is, there are multiple ways you can learn. You can use visual aids, you can have the auditory stimulation, and you can also have questions and answers. And that’s one thing about having a person, being able to be flexible and personalize the care for the consumer.

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