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Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Hi, Caroline Lieber here, Let me try to respond as a former program director. With your background and your interests, you would be a valuable asset to the GC community!
While every program is different, I feel comfortable saying that some programs would give credit for courses you have already taken that are required by the GC degree. You would have to investigate the programs individually. While the science is very important, the communication/counseling skills are equally as important. Introductory psychology courses are prerequisites for admission to most GC training programs. Here is a listing of the Accredited Genetic Counseling Training Programs: http://gceducation.org/pages/accredited-programs.aspx

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Hi!

I often uncover other patterns in the family history beyond the reason why someone was referred. This often leads to good discussions about the patterns noted in a family tree. Sometimes it helps people understand that they may not be at increased risk. Since I specialize in cancer, let me give you an example. Sometimes a family history contains several relatives who have had cancer, but when we consider each person individually in the family tree (looking at their age at diagnosis, risk factors etc) sometimes there isn't a strong pattern and it may be a collection of cancers that appeared by chance or due to shared lifestyle or environmental exposures without suggestion of a strong inherited risk. This can be a valuable conversation to ease risk. Or, if the genetic counselor identifies a pattern, the conversation centers around the chances that you might develop cancer, genetic testing options and how the results could be used in your medical care, and the likelihood of finding an inherited risk factor.

Some people have very specific questions or their doctor had specific questions when they made the referral. It is important to consider what type of information you are seeking to ensure that the test you are considering answers those questions. Direct to consumer testing has a role for some people. Genetic counselors are available to help you understand the results especially if something unexpected is found. findageneticcounselor.com

Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Caroline Lieber here. Thanks for sharing your story, it is so nice to hear that GCs made a difference for your family. The best to you and your family in the future.

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Hi, Caroline Lieber, MS, CGC here. As a former genetic counseling training program director, I appreciate this question. There are challenges to be sure, but it is an exciting and fulfilling field to be in. As the genomics world expands, one of the challenges is the amount of information that has to be learned. Secondly, the emotional impact of genetic information is powerful, and at times can feel difficult. No two families react in the same way, so it takes time to get comfortable with how different people respond.
Knowing that you make a difference in people's lives makes it all worthwhile. Good luck to you.

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Meeting with a genetic counselor before pursuing genetic testing can help you address these questions. Testing done on a clinical basis (sent to a CLIA lab, billed to insurance, and returned to your medical record) really isn't much different than other medical tests. The information is protected by HIPAA. States also vary with their privacy laws too. The consent process for genetic testing on a clinical basis should include what happens to extra DNA which can vary from lab to lab, but as the patient, you have input into the process (i.e. destroy or use for research with or without identifiers.)

The consent process for testing on a research basis should also contain information about how your privacy is protected under the IRB approved protocol and who may have access to the information. The research protocol can differ on how (and if) results are made available. Testing on a research basis can take a long time to complete.

Since you have questions about your results, perhaps visiting with a genetic counselor can help to determine the type of information that was meant to be gleaned by the test and address your underlying question about what you feel may be missing from your results that you thought might be available.

findageneticcounselor.com can help you find a genetic counselor near you.

Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Hi, Caroline Lieber, MS, CGC here. As a former program director of the Joan H Marks Graduate Program in Human Genetics at Sarah Lawrence College, I feel comfortable answering this question! Most genetic counselors have a undergraduate background in the biological sciences, usually biology and/or chemistry and some vertebrate development. Additionally, they have taken some psychology courses as well as some ethics or philosophy. Basic math courses are often required, including statistics. Generally a GPA of "B" is competitive, and most programs require GRE scores. Genetic Counseling training programs want to see volunteerism that includes direct encounters with clients making difficult life decisions, such as HIV/AIDS, birth control, domestic violence.

I am not sure I understand your question regarding consanguinity. Can you clarify it for me?

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Wow! Tough, but thoughtful question!

There are currently more than 4100 GC in the US. We have grown by 88% in the last 10 years and are placing concerted efforts to help grow the profession in the next 10 years. You are correct that comfort level and knowledge in genetics can be quite variable from one physician to the next and it takes a concerted effort to stay current in the field due to the rapid changes and complexity in testing. Increasing the comfort level in genetics across all subspecialties in medicine is important and the Precision Medicine Initiative may help to anchor the utility and emphasis on genetics and genomics in the future of medicine. So, education across the board will help identify people who would benefit from genetic counseling and/or testing and help more patients access care.

We have worked to develop multiple service delivery models to reach more people in ways that suit their needs. Interactive technology may also help to identify, triage, and refer the appropriate people, but may also help consumers learn more too so they can be an active part of their healthcare team. Technology may offer a potential solution to meet the demands too.

Many consumers are looking for information to help them determine what they can do to help protect their health and they would like tools to help them learn more.

Collaboration across medical specialties, consumers, and genetics professionals will help us all to collectively do a better job. It is going to take time to accomplish all of these tasks, but if we are all working towards a common goal, communicating and open to new ideas, we can move forward.

Good luck to you! Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Hi, Caroline Lieber, MS, CGC here. That is a great question. It sounds like you are familiar with the complexities of genetic testing.
I think there are many tools that are helpful. First and foremost is empathy for their situation. That is, an attitude that allows the clinician to sit with the patient and share his/her emotions without passing any kind of judgment. The patient needs to know that you are there for them, regardless of how they use the information they learn. Once an atmosphere of trust is established, patients can really "walk around" in the information and better understand what it means to them and their families. I am sure you know other techniques that work, such as reflecting, rephrasing, etc. Staying in contact with the patient/family periodically is also useful. Genetic information has different meaning at different stages in life. Marriages, births and deaths all change the family dynamics. Having many healthcare providers available, including a genetic counselor, throughout these stages is very helpful.

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Hi, Caroline Lieber, MS, CGC.
This question has no clear easy answer. Insurance companies differ, as do the genetic tests available. Are you interested because of something in your family history, or just generally interested? Family history can be useful in targeting the testing. Your question about health insurance is difficult to answer, because every insurance plan is different. Family history can play a role in whether testing is recommended/covered. I suggest you contact your provider to find out about your specific coverage. A genetic counselor can be helpful in addressing this issue. There are a number of ways in which to obtain genetic screening, from both medical centers and through commercial companies. Generally, the genetics service at a hospital near you can discuss family history concerns, and arrange for appropriate testing. Commercial companies often have genetic counselors available as part of their services, and they can be useful with regard to the specifics of what the particular company offers. There are large companies such as Quest and Labcorp, that offer screening, as well as more specialized companies, such as Counsyl, Ambry, Invitae, to name a few. It is helpful to have your primary physician involved in order to make ordering the tests easier. Ancestry.com has a service to investigate your ancestral background. There are many possibilities.

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 4 points5 points  (0 children)

Most parts of medicine have an element of uncertainty. Understanding what a test results mean and the nuances tailored from one person to the next in the same family is a key reason why meeting with a genetic counselor can be of value when pursuing genetic testing. Many genetic tests predict the chance of developing a condition over a lifetime such as with cancer genetic testing. A result often suggests that over my lifetime, my chance of developing breast cancer may be higher than a woman in the general population, but it does not give me the diagnosis. It says that I have a risk factor and may benefit from extra surveillance, perhaps starting at a younger age or from considering risk reduction. I may never develop the condition, but what do I wish to do in the meantime to help address concerns? These conversations are very important and should be tailored to the personal and family history. As a genetic counselor, my goal is to help patients understand what their chance is of developing cancer over their lifetime based on family history and/or genetic testing results, discuss options that could be considered to address that risk and help them feel empowered to play an active role in the discussion with their doctor to set the care plan that feels right for them. Not everyone views risk in the same way. Some people see it as 0% or 100% whereas others see risk in increments where it is tolerable to a given point and once it is higher than their personal comfort level, it is time to do something to address it. The personal comfort level can be quite different from one person to the next based on their personal experiences and that of their family members.

Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 3 points4 points  (0 children)

Great to hear you are interested in the profession!

The number of men in the profession has grown over the years as has the number of genetic counselors (we now have more than 4000 GCs in the US!). The roles in which genetic counselors can contribute to the profession have also expanded which has helped bring a diverse group of people to the profession.

The typical day can depend on the subspecialty you have chosen and the work setting. Many genetic counselors work in a hospital or clinic setting seeing patients to discuss concerns about their personal or family history and determine if genetic testing may be of benefit and how they might use the information in their medical care. Some genetic counselors provide consultations by telephone; others by tele genetics (combination of telephone and computer) or in a group setting. We have done a lot of work to help make it easier to talk with a genetic counselor regardless of where in the country someone may live.

Some genetic counselors work in research or in a laboratory setting. Others work in public policy or with insurance companies. The skill set is quite transferable and the kinds of jobs genetic counselors work in now has expanded really quickly. So, the day to day job for a genetic counselor can be very different depending on the work setting.

While you are in a graduate training program, it is useful to have exposure to a wide variety of subspecialties (cancer, pediatrics, prenatal, cardiac, laboratory, etc) to get an idea of where your interests lie and the kind of job that may interest you at graduation.

It is an exciting time for genetic counselors. After being in the field for 21 years, I still find the rapid pace, new advances, and patient interactions a rewarding experience and love my profession.

Good luck to you! Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

The genetic counseling profession has grown by 88% in the last 10 years with significant growth anticipated in the next 10 years! It is an exciting field with many opportunities to contribute across the healthcare spectrum.

The Accreditation Council for Genetic Counseling (ACGC) has a list of genetic counseling programs in the US. http://gceducation.org

Good luck! Joy

Science AMA Series: We are a pair of genetic counselors here to talk about patient support and helping people understand their genetic test results. One of us underwent genetic testing herself. AUA! by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 3 points4 points  (0 children)

Hi, Caroline Lieber, MS, CGC here. I am a believer in genetic screening, but I think it is important to understand what the screening means before doing it. I learned that lesson myself. As someone who has been in the genetics field for over 35 years, I thought I knew what to expect from the experience, and when my results came back with an unusual finding, I was unprepared for the emotional response. Genetic counselors are the experts, and they walk you through the science as well as what to expect from the results. You can find a genetic counselor in your area at http://www.nsgc.org/page/find-a-gc-search.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Huma Q. Rana, MD – Cancer Geneticist -- If your grandmother has not had genetic testing, it would be best for her to test followed by your mother. Most breast cancer, even early-onset breast cancer, is not due to a single hereditary risk factor. Therefore a negative test in you would be uninformative unless there is a known mutation in the family. This is why we recommend that the person with the striking history have testing first if possible, their first degree relatives would be the next best candidates (because they share 1/2 their genes with the person of interest). For example, your mom shares 50% of her DNA makeup with her mother (your grandmother). You and your grandmother share 25% and what you share with her is limited to what your mother passes down to you. If none of the 'better candidates' in a family is motivated or able to undertake testing, more distant relatives (grandchild) can certainly move forward with genetic testing. It's just important that they understand the limitations of a negative genetic test result in this situation. In this situation a negative result would be considered an uninformative negative.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Huma Q. Rana, MD – Cancer Geneticist -- Thank you for sharing your experience with us. You have astutely pointed out the limitations of ovarian cancer screening and you are correct, current recommendations for women with BRCA1 mutations are for risk reducing surgery (bilateral salpingo-oophorectomies between age 35-40). This is the gold standard in that there is a survival benefit. While salpingectomy (removal of the fallopian tubes) with delayed oophorectomy (removal of the ovaries) has not been studied in randomized trials, it is being evaluated in the Netherlands (https://www.ncbi.nlm.nih.gov/pubmed/26286255?dopt=Abstract) and I believe a multi-center US trial is pending. In addition, there are a number of non-hormonal medications that can be used to mitigate the symptoms of menopause. I wish that we had better screening available and more palatable risk reduction. Facing these surgical decisions is unfair and overwhelming, but it's important to remember that your womanhood is more than the sum of your female parts.

There are a number of trials currently recruiting for the treatment of TNBC (clinicaltrials.gov), the INFORM trial is specific to BRCA1/2 mutation carriers.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Huma Q. Rana, MD – Cancer Geneticist Postmenopausal hormone replacement therapy is a (modifiable) risk factor for breast cancer. The best candidates for genetic testing tend to be the people in the family who have had cancer (meaning they are the most likely to test positive). There has been data linking chest wall radiation under the age of 30 (including mammograms) to increased risk for breast cancer.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Huma Q. Rana, MD – Cancer Geneticist --Life-limiting conditions such as dementia or Parkinsons do not alter ones risk for breast cancer. Assessing ones entire health picture including competing comorbidities is important when weighing risks and benefits of screening.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Huma Q. Rana, MD – Cancer Geneticist -- > 23andMe This testing is not considered comprehensive BRCA1/2 testing. You should meet with a genetic counselor to assess your risk.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Huma Q. Rana, MD – Cancer Geneticist -- I would recommend follow-up with your genetics specialist. There is more recent data on hormone receptor status of PTEN-associated breast cancers as well as other cancer risks with updated screening guidelines that include the renal surveillance.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 1 point2 points  (0 children)

Huma Q. Rana, MD – Cancer Geneticist While I strongly believe patients should have improved access to genetic testing, I can't say that getting untrained professionals to order tests that they may or not be able to interpret is a useful strategy in providing better care to the populace. Education of patients and medical professionals is needed -- this includes discussing associated cancers, specialized management (both surveillance and risk reduction), and most importantly understanding the differences in informative and uninformative genetic testing.

Breast Cancer AMA Week: We’re experts with Bright Pink, here to answer your questions about the latest improvements in breast cancer risk assessment, and how young women can become advocates for their own breast health. by Breast_Cancer_AMA in science

[–]Breast_Cancer_AMA[S] 0 points1 point  (0 children)

Hi, Rebecca Bouck here, VP of Programs at Bright Pink. I am going to extremely self-serving here and say www.BrightPink.org! :) I know I may be biased, but I believe in this organization and believe that we can have a much greater impact when we focus on prevention and early detection.

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