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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Does History Shape Society’s Attitude Towards Genetics?

I visited D.C. as an undergraduate student and spent a majority of my time wandering around various Smithsonian museums.  I got to see Dorothy’s ruby slippers, Kermit the frog, and Apollo 11 artifacts.  There was one exhibit that left a lasting impression on me which was the Deadly Medicine:  Creating The Master Race exhibit at the Holocaust museum.

DEADLY MEDICINE: CREATING THE MASTER RACE

From 1933 to 1945, Nazi Germany carried out a campaign to “cleanse” German society of individuals viewed as biological threats to the nation’s “health.” Enlisting the help of physicians and medically trained geneticists, psychiatrists, and anthropologists, the Nazis developed racial health policies that began with the mass sterilization of
“genetically diseased” persons and ended with the near annihilation of European Jewry.

To relate this history, the United States Holocaust Memorial Museum has assembled objects, photographs, documents, and historic film footage from European and American collections and presents them in settings evoking medical and scientific environments. Deadly Medicine: Creating the Master Race provokes reflection on the continuing attraction of biological utopias that promote the possibility of human perfection. From the early twentieth-century international eugenics movements to present-day dreams of eliminating inherited disabilities
through genetic manipulation, the issues remain timely.”  (http://www.ushmm.org/museum/exhibit/traveling/details/index.php?type=current&content=deadly_medicine)

The Genetics Revolution seems to focus so much on the future that we forget about the past.  Who are we to say the past does not affect us on some level?

Eugenics is, unfortunately, real.  Is this why so many people are concerned about The Genetics Revolution?

I know eugenics is a very sensitive subject but that doesn’t mean we should ignore it.   I think it is important for us to explore the history of genetics and the impact it has had on society.  I don’t know about you, but I have met several people who immediately assume genetic counselors encourage some form of eugenics.

Do you ever feel like in a sense the past is holding us back in terms of the public fully accepting The Genetics Revolution?

The reason why I’m bringing this up is because this exhibit will be visiting my town for a few months.  I hope to do a follow-up post about it from the perspective of a genetic counselor.  I hadn’t even started to apply to genetic counseling programs when I first saw this exhibit.

I also see this as an opportunity to educate the public about misconceptions that might be out there about genetic counseling.  There has been a lot of buzz about this exhibit.  I’m open to any suggestions as to how I can use this exhibit as a platform to educate the public and to increase awareness in genetics.

Thoughts?  Suggestions?  Comments?

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Emerging Technology vs Old School

I don’t know about you but I have a love-hate relationship with technology.  It can make things simpler but it can also make things more difficult.  There are days where I miss old school…..you know….regular paper and pens.  There are also days where I am thankful for oodles of information available at a click.

Regardless of if you love or hate technology, we are in the middle of a technology revolution.  We  have to figure out ways to incorporate technology into our profession in positive ways.   We cannot ignore this revolution.

There has already been some resistance to the incorporation of technology within our profession.   There has been a lot of valid concerns about direct-to-consumer services, telephone genetic counseling, and online family history/pedigree programs.

Patient 2.0 is the concept where people meet online to discuss their health, clinical trials, which hospitals to avoid, which doctors to see, and treatments.  While this encourages people to take charge of their health it can be a danger if they believe inaccurate information found online.   Does Patient 2.0 do more harm than help or is it vice versa?

You can even ask healthcare questions on Twitter.  You can easily search for genetics apps on your iPhone/iTouch.  Some of these apps include; MGenetics, PubSearch, NextBio (correlated data from all public gene expression experiments), Odd Diseases: Genetics, and BioGene).  You can even listen to podcasts or genetic lectures at iTunes U.  If used correctly, apps could be developed to exposure middle and high school students to  the field of genetics.  Apps could also be developed as study tools for genetic counselors, however, we should not depend on these apps.

*Start rant:  Most podcasts and lectures are NOT captioned.  If you ever find yourself making a podcast please subtitle, caption, or make a transcript available.  THANK YOU! *End rant* :-)

There is a new form being formed and it is a group with full access to technology.  What about those who do not have access to technology (e.g. Internet)?

Two concerns I would like to touch on:

1)      Should healthcare information online be regulated?  Should we start exploring ways to teach the public the limits of technology (e.g. don’t believe everything you read online)?

2)      It is easy to get lost in this technology revolution.  There will soon be a forgotten group.  People who do not have access to or do not feel comfortable with technology will be left behind.   How do we make sure this group will always have equal access to genetic services/information?

How can we combine the pros of both technology and old school in order to provide high quality genetic services for EVERYONE?

Thoughts?

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Practicing What We Preach: Genetic Counselors, Disability, and Advocacy

Disclaimer:  I do not consider my deafness a disability, however, society defines it as a disability.   Therefore, I utilize quote marks and refer to it as “disability.”

As genetic counselors we are trained to respect and advocate for patients.  We are also trained to not to make pre-assumptions about their strengths, skills, and weaknesses.  Our training doesn’t always seem to apply outside of the counselor-patient setting.

As a deaf person, I knew it would be a difficult journey when I first applied to genetic counseling programs.  Little did I know how difficult it would be as a deaf person to find my place in this profession.  Genetic counselors learn about many different genetic conditions and work with many people who have various genetic conditions.  Oftentimes these genetic conditions fall under the category that society labels “disabilities.”  Even though I do not consider myself to have a “disability,” other genetic counselors sometimes took a different view.

Here are just a few of the barriers I have faced in this field because of my deafness:

  • I have been rejected from genetic counseling programs solely because I was deaf.
  • When I was invited for interviews for genetic counseling programs, I didn’t always have an interpreter available for the whole interview.
  • I was told by rotation supervisors that deaf people should not be genetic counselors.

The list goes on and on but my personal struggles are not the main focus of this post.  I just used some of my personal experiences to serve as examples.

Fortunately, these attitudes are not universal among all genetic counselors.  I have had some positive experiences during my brief career.  For example, I have never had people advocate for me as much as some groups within this field have.   It wasn’t until I started graduate school that, for the first time in my life, I truly felt like there were people out there who did want to see me succeed and were willing to go out of their way to advocate for me.

The barriers I have faced within this profession has made me question how genetic counselors truly view people with “disabilities.”  It has made me question if genetic counselors feel equal or above their patients who have “disabilities.”  Do genetic counselors serve as advocates because of some sort of deep need to help “poor unfortunates” or do they like being in the helper role and not because they truly want to see their patients be successful?  This is a very difficult question to ask of the profession and of ourselves.

I am playing the role of the devil’s advocate here.  This is not intended to be an attack against the genetic counseling profession.  Rather this post is intended to hopefully encourage genetic counselors to question why they may advocate for a person if they’re a patient but not if they’re not a patient.  What does it tell us about ourselves? Why does it appear that the role of serving as advocates have boundaries?  Where are those boundaries?  Should there even be boundaries?

Does it mean society’s attitude towards people with “disabilities” is so powerful and ingrained in us that we have to be specifically trained how to advocate and be on neutral grounds when counseling patients?   Does it mean our training is not good enough for it to cross over in all other aspects of our profession?

Is it that “disability” seems to go hand in hand with being a patient and it’s hard to separate those two?  Is it time to change our perspectives of people with “disabilities” to more than just patients?

I know it is possible for genetic counselors to pull together and advocate for other people.  My question is why doesn’t this happen on a more consistent basis?

Do genetic counselors need to analyze their perspectives on “disabilities” more thoroughly?  How can this be done?  I would love to see this profession become more welcoming to those with “disabilities” instead of constantly questioning their ability.  Oftentimes what one may see as a “disability” is that person’s strength.

I have seen this profession make attempts to make this field more diverse.  Usually diversity is thought to include people from different socioeconomic, ethnic, and religion background.  Why can’t diversity include people with “disabilities?”

I have learned so much from people within this field who have pulled together to advocate for me when the profession tried to work against me.  I want to make this field more accessible to people with “disabilities.” I want to pay forward what I have been given.

I genuinely want to hear your opinion regarding this topic.  It’s the only way I can start to understand why there are so many barriers within this profession and why we only seem to apply our training in certain settings (e.g. patients vs. professionals).

Changes won’t happen until we understand.  To understand something, we need to explore and question things.

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