Category Archives: Kelly Rogel

Are Masters Degrees Going Extinct?

How often do you find yourself explaining what genetic counselors do?  Do you ever feel like no one knows how to categorize your career?  The reality is that we are a little bit of everything and accordingly there isn’t a single label that fits us neatly.  We are medical professionals, researchers, educators, advocators, and administrators.

As genetic counselors, we are constantly reminded that we don’t fit neatly in a single category which can make our exact role confusing.  Academic institutions, private clinics, and medical institution are unsure how to utilize our skills or determine our status.   Would an advanced degree focusing on the clinical care of patients allow us to be more clearly “labeled” by institutions so that our knowledge is more respected and sought out?

Genetics is a constantly evolving branch of science.  Exciting, game changing scientific discoveries are announced frequently, genetic counseling changes with those discoveries.  As part of this evolution, genetic counselors are specializing and seeking out different roles within their institutions.  How do we ensure that the genetic counseling profession stays at the cutting-edge of the genetics movement and don’t get left behind?

Many health professions focused on clinical care have acknowledged that their current training may not allow room for future growth of their profession.  Nursing, physical therapy, psychology, and pharmacology are a few fields that now offer clinical doctorate degrees.

A clinical doctorate (CD) is an advanced degree that focuses on the clinical care of patients.  Individuals with a CD serve in a clinical role in a variety of settings where they provide patient care and patient focused research.  Upon the completion of the 3-4 years of post-baccalaureate training, the title “Doctor” can be used in the same sense as a “PhD Doctor.”

There has been an excellent discussion begun among genetic counselors weighting the pros and cons of a clinical doctorate degree for genetic counseling.  Some feel there isn’t a need for a higher degree in our profession.  Others are concerned about the cost, both financially and time involved.   Still others believe a higher degree for our profession would open more doors of opportunities for us and allow us to grow as a profession.  A piece of this discussion is available for review and comment on the NSGC clinical doctorate listerv.

For those who haven’t heard much about the topic yet, here’s a brief introduction to the options.  If  the decision is made to offer a higher degree for our profession there are two different approaches that can be taken:  Clinical Doctorate as Terminal Degree or Clinical Doctorate as Entry Level Degree.

Clinical Doctorate as Terminal Degree:  All genetic counselors would continue to be trained in a Masters level program with the Masters degree being the entry level degree.  Genetic counselors would then be given the option to pursue a clinical doctorate degree in genetic counseling if one desires to do so (a CD would not be mandatory).  This would mean that some genetic counselors would have a Masters and some would have a Doctorate.

Clinical Doctorate as Entry Level Degree:  The long-term goal would be that over 20 years all genetic counselors would have Clinical Doctorates.  This would be a slow process allowing for a smooth, positive, and easy transition from the current Masters degree to Clinical Doctorate degree for our profession.

Thoughts?  Concerns?  Pros?  Cons?  We want to hear from you!  We will continue this discussion with a follow-up blog post and we want to make this a two-way street exchange between all genetic counselors.

There is great informational PowerPoint presentation available for review at the NSGC website and plenary scheduled at the NSGC Annual Educational Meeting in 2012.

Co-authored by Dawn Laney and Kelly Rogel.  Dawn Laney  is a genetic counselor, research coordinator, and instructor at Emory University in the Department of Human Genetics.  Although she is a child of the computer age and is all for innovation she secretly prefers to use pen and paper to write rough drafts of anything creative.  Kelly Rogel is a graduate from Sarah Lawrence College’s Genetic Counseling program and is currently serving as a Peace Corps Volunteer Teacher for the Deaf  and HIV/AIDS Educator in Kenya but spends her free time learning more about how genetic services in Kenya can be expanded.

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Cross-Cultural Genetic Services

I have enjoyed the opportunity to be a part of this wonderful blog as an author.

I am leaving for Kenya where I will serve as a Peace Corps Volunteer for 2 years. I will serve as a Deaf Educator at a school for the deaf. I will also be a Behavior Communicator and will work with HIV/AIDS prevention within the deaf/hard-of-hearing community in Kenya.

I will also have a 3rd project which can be anything we want to do. Since genetic counseling is one of my passion I want to make my 3rd project something that has to do with genetic counseling. I would love to hear your input regarding genetic services in different countries and what we can learn from it.

While I am stepping down from this blog as an author, I do hope to continue to blog as a guest providing I have Internet access in Kenya.

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Stillbirths and Miscarriages: Taboo Subjects?

Why is it taboo to discuss miscarriages and stillbirths publically?

I had a recent discussion with friends regarding their thoughts on if miscarriages and stillbirths should be discussed publically.

Friends who announced their pregnancy early felt they had to defend their decision for an early announcement.  People kept asking them what they would do if they had a miscarriage.  Those friends would reply they chose to announce their pregnancy early so they would have a large circle of support if they were to have a miscarriage.

Does society wants us to look the other way if something “sad” happens?   Is it because we want to protect our family and friends from potentially “bad” news?  Is it because we don’t know how to react when hearing the news that a close one had a miscarriage or a stillbirth?  Is it because it makes us feel helpless?

This discussion bought up the role of social media in our daily life.  Sometimes I see Facebook status updates that a friend is pregnant, having contractions, or just had a boy/girl.  Every once in a while I see updates that a friend just had a miscarriage.

I have noticed people do not always know how to response when someone posts about  having a miscarriage.  Some become upset that this was posted and think it should be a 100% private matter.

I have also noticed a couple of friends posting pictures of their stillborn baby.  This seems to upset some people who feel something like this should be private and not posted.  Is it because people don’t want to deal with the sadder aspect of pregnancy and birth process?  Is it because they want to be protected in a sense and only hear the “good” things?   Is it because it scares people that this could happen to them?  People complain it’s inappropriate and inconsiderate for stillbirth pictures to be posted.

On the other hand, there are people who feel this is a great thing to do in the grieving process.  Just because they had a miscarriage or a stillbirth doesn’t mean they were never pregnant.  They still want to share their child with the world.  They don’t want to hide the baby-parent bond, they don’t want to hide their love, and they don’t want anyone to forget their baby.

This again, comes back to the fact that discussions of miscarriages and stillbirths is considered taboo in our society.  Should something that is common and a natural part of human life be hidden?  Or should it become more accepted that this is part of life and it’s ok to share it with others?

Personally, I believe people should be able to do what is most appropriate for them without feeling like they have to defend themselves.  Some people prefer to be more private while others prefer to be more public.  My personal belief is that people usually know what is the best for them in situations like this but there needs to be more support and acceptance from society for people to be able to make that decision.

What can we do as, genetic counselors, to help get rid of that taboo?

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Genetics and Teachers

Over the years, I have both volunteered and worked as a teacher’s aide in various classrooms.  I have several relatives and friends who are special education teachers.

Many children in special education programs have genetic conditions and I am always surprised at how little many teachers know about genetics.   This prevents them from understanding how they can work with their students in the best ways.  This prevents them from understanding what sort of medical issues each child might have and how to watch for red flags.  This also causes miscommunication between parents and teachers.

When I am able to explain what a genetic condition is to a teacher, I see a difference in their teaching approach.  They become more accepting and set realistic goals their students can achieve.  Those goals are usually set higher.

Teachers continue to see the child for who he/she is and do not allow the genetic condition to define their student.  Instead, they have a better understanding why certain behavior or medical issues may arise and are more prepared for those issues.  This in turn creates less stress for the student and parents.

This also leads to improved communication between parents and teachers.

Parents  enjoy being able to talk openly about concerns to someone who understands and knows their child.

Teachers also have a lot to teach us genetic professionals, I know this from personal experiences.

Should genetic professionals explore ways for making resources about genetics more accessible for teachers?  If so, how?

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DTC Companies Under Fire

I was originally going to type a post about genetics within the special education field.  Then I ran across this article, Couple sues over failed Down Syndrome diagnosis and was going to write about wrongful birth lawsuits.

However, there has been so much in the news today about DTC gene tests which I couldn’t ignore.  DTC companies have the potential to make a positive impact on the public by improving accessibility to genetic services.  Unfortunately, those services are currently being questioned.

Today, the Subcommittee on Oversight and Investigations held a hearing, “Direct-To-Consumer Genetic Testing and the Consequences to the Public Health).”  For more opening statements and testimonies go here.

What caught my attention was the federal ‘sting’ where undercover investigators either ordered kits or called companies with questions.  Check out the brief video below with snippets of recorded phone conversations between DTC companies and undercover investigators.

The FDA also sent out letters to 14 companies regarding genetic tests they provide.  Click here for a list of those companies and letters.

The U.S. GAO (Government Accountability Office) has released a summary and full report “Direct-To-Consumer Genetic Tests:  Misleading Test Results Are Further Complicated by Deceptive Marketing and Other Questionable Practices.” Go here to read this report.

Thoughts?

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The Future is Here

The endless possibilities of genetics is oftentimes left to our imagination.

The media draws attention to genetic experiments they know will sparkle heated debates.  Don’t forget all the books and movies out there that portray genetics as something that will change the human race and will give us super powers.   There have been so many times where the public is exposed to a small area of genetics and the focus is somewhat on “….look at the cool stuff we can do….”

Anyone remember Dolly?

How about the mouse with a human ear on its back?

Don’t forget the glow-in-the-dark puppy.

The future is here, just in a different way than the media has been portraying over the years.  The future is here in terms of personalized genetics and taking charge of our health.

The public has reacted by fighting limits placed on DTC tests.  The public argue they are capable of interpreting, understanding, and making health decisions based upon their individual genetic information all on their own.   In other words, they are saying they don’t need genetic counselors.

The future is here and it could make or break the genetic counseling field.

NOW is the time for us to find our place.  NOW is the time for us to speak up and gain public recognition.  NOW is the time to show the importance of genetic counselors.  NOW is the time to make “genetic counselor” a household term.

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Social Media as Support Resources

Some of you may remember a post I made a few months ago, Emerging Technology vs Old School. I discussed briefly how we have to find ways to incorporate technology into our profession in positive ways.  I also touched on how we cannot forget that there are people who do not have access to technology and they ARE getting left behind.

We cannot ignore either group.  How can we make sure both groups have access to the same information but in different ways?  This is not the main focus of this post.  I just wanted to remind readers that even though in this post I focus on resources that are more available to people who have access to technology, we must not forget that not everyone has access.

Facebooking, Twittering, and Blogging are what I think of when I think of social media.  Facebook groups can serve as support groups.  Blogs can serve as an excellent way to share thoughts and emotions.  Twitter can help connect people going through similar situations.

Since I have Google alerts set up on my Google readers I oftentimes run across blogs written by people who have experienced genetic counseling or have children with genetic conditions.  I have found that reading strangers’ blog posts about their daily life with a genetic condition and their perspective of genetic counseling has taught me so much more than I could ever learn from reading a textbook.

I get their honest opinion.  I learn how misconceptions develop.  I learn about different attitudes and perspectives.  I learn more about people’s thought processes.  This allows me to see their situation from their point-of-view which in turn helps me as a genetic counselor.  An example of a powerful blog website is, CaringBridge.

CaringBridge is a blog website that “connects family and friends when health matters the most.”

“Human connection. That’s the heart of the CaringBridge experience.”

I have read several CaringBridge blogs written by parents with children who have a genetic condition.  I have also read CaringBridge blogs written by people with genetic conditions.  I have read personal stories about how many families are thankful for CaringBridge blogs.  It allows them to share news with concerned ones without having to worry about making multiple calls.  It allows them to express personal thoughts through writing that they may not normally express which helps with the coping process.  It also allows them to find other people who are going through similar situations as they are.  It makes people feel less lonely during scary times.

If used correctly, social media could be a great support resource for patients.   Social media should NEVER replace actual information or serve as a sole resource.   They should simply serve as support resource in the same sense as recommending books and connecting patients who may be going through similar situations.

Would you (or have you) ever suggest social media as a form of support resource for your patients?   How do you make sure it’s appropriate for your patient?

Would you ever use social media as a teaching tool for yourself or for genetic counselor students?  If so, how do you do this?

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