Author Archives: Kelly Rogel

by | March 15, 2010 · 4:02 AM

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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by | February 11, 2010 · 11:28 PM

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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by | December 14, 2009 · 6:17 PM

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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by | October 21, 2009 · 10:15 PM

How To Work With Interpreters

Jessica’s most recent post, Interpretation Declined, struck a chord with me.  She brings up a very good topic and it was refreshing for me to see it from a different perspective. I wanted to expand on this topic some more since I have utilized interpreters as both a genetic counselor and as a patient.

Jessica writes about her experience as a genetic counselor who works with interpreters.  I’m writing from the other side of the fence; the patient’s experience using interpreters.  I hope some of you find this helpful or this serves as a refresher if nothing else.

The top 5 things I wish health care providers knew when working with interpreters.

Note:  I’m deaf myself and have worked with numerous interpreters in various settings.

1)    Make the situation less stressful as possible for everyone. It’s always stressful going to the doctor’s office but it is even more stressful not knowing if a qualified interpreter will be available for an appointment or if a medical provider knows how to use an interpreter.

I, personally, worry more about if an interpreter will be present at my doctor appointments than the actual appointment or not.  I greatly appreciate it when the doctor’s office calls me prior to my appointment to let me know if an interpreter has been scheduled.  This reduces my stress level and shows that the doctor’s office cares about accessibility and I’m a lot more likely to focus on my health itself than communication barriers that may arise.

When possible, genetic counselors should try to contact their patient in advance notifying them that an interpreter will be available even if it’s only an hour prior to the appointment.

This makes a big difference because it shows you respect your patients and shows them you want your patients to have equal access to information.

2)    Remember the interpreter is not there just for the patient, he/she is there for you also. For the longest time I felt like I was a burden whenever I needed an interpreter which in turn made me want to avoid going to the doctor.  Health care providers tended to make me feel like it was my fault I needed an interpreter because I couldn’t understand spoken English.

I read something a couple of years ago that made me realize that an interpreter is there not just for me but for the health care provider also.  I do not speak the same language my health care provider speaks and my health care provider does not speak the same language I do.  Hence we both need an interpreter to understand each other.

A suggestion for genetic counselors would be to remember it is not only the patient who needs an interpreter, YOU need an interpreter too.  Do not make the patient feel like he/she is a burden by making them feel like you had to go out of your way to work with an interpreter.

3)    Preparation. As genetic counselors we know the importance of case preparation prior to an appointment.  Don’t forget to prepare interpreters also.

When possible take 5 minutes prior to an appointment to review the case with the interpreter.  Mention the patient’s name because it is possible the interpreter may already know the patient from outside a medicine setting which could lead to awkward situations for the patient and possibly a bias in the translation.

Give a brief review of the case-particularly genetic terminology.   This gives you the chance to bring up any sensitive issues that an interpreter may say he/she cannot interpret without a bias.  A review of uncommonly used terminology helps ensure information gets translated correctly.

4)    Medical interpreters. My best health care experiences have involved medical interpreters.  I know many of you use telephone interpreters, but try and check as if your scheduled interpreter has any medical training.

If you work with a specific interpreting agency on a daily basis contact the company and ask if you can send some information to them that can be reviewed with interpreters.  I have found as a genetic counselor that it makes a huge difference when I provide an interpreter with a list of commonly used genetic terms with brief definitions.

5)    Know your rights and how to work with an interpreter. If you do not feel comfortable using a specific interpreter, request a different one.   You are entitled to working with a qualified interpreter.  Become familiar with the type of interpreter services your hospital works with.  How are those interpreters hired?  Do they have any medicine background?  What kind of certifications do they have?  Have they been trained to be neutral?  What are their qualifications?

Have high standards for interpreters you work with and develop work relationships with them.  Keep the communication line between you and interpreters open.

Don’t forget, you are speaking to your patient and not the interpreter.  Maintain eye contact with your patient and avoid using phrases such as “tell her,” “what does he think,” etc.

Relax and be comfortable.  🙂

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by | August 28, 2009 · 12:44 AM

Label Jars….Not People

jarsAs genetic counselors we hope to make a difference in someone’s life.  Why not expand on that?  While our primary focus should be on our patients, we should also strive to utilize our skills outside of the workplace.  Not only will this have an impact on the world, it will also indirectly have an impact on our patients.  It’s a circle.

It does not have to be something that requires a lot of time, thinking power, or effort.  It can be something very simple.  There are many different ways that this can be done; this is just one example.

Labels.

You have been labeled at some point no matter who you are or where you are at in your life right now.  You have felt how degrading those labels can be.  You know first handed how it can negatively affect your perspective and other people’s perspective of yourself.  Some labels originate within the medical community.

We may use labels to communicate effectively and quickly with busy MDs.  We may have to use them in order to protect a person’s confidentiality.  However, labels should only be used when absolutely necessary.  They should not be used to form expectations of someone.  Genetic counselors oftentimes strive to use sensitive language with patients.

For instance, we may say “change” instead of “mutation.”

We try to choose neutral words when possible.  We have seen how word choices affect our rapport with patients.  I’m sure you’ve heard of the idea of making it a point that people are people first and a genetic condition is just part of who they are.  An example would be to say “people with Down syndrome” instead of “Down syndrome people.”  We should take the same sensitive approach in daily conversations outside the workplace.

This helps to prevent pigeonholing people and shows respect.

We can take what we learn from the workplace and apply it to the outside world to make a difference.  Exploring various ways to apply our genetic counseling skills outside of the workplace will only make us better genetic counselors within the workplace.  Once again, it’s a circle.

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by | July 23, 2009 · 7:53 AM

When The Line Between Being A Friend and A Genetic Counselor Becomes Fuzzy

Set scene.

It’s 9 pm on a Friday night and I walk into a friend’s apartment all ready to catch up on meaningless gossip with friends.

“Kelly!  I have a genetics question for you.”

“What if I have a family history of *insert condition* what are the chances of me having that condition?”

“Is it okay to take this medicine during the first trimester of my pregnancy?”

End scene.

I imagine many of you have found yourselves in similar situations.  I constantly get questions from friends and family members regarding their chances for developing a genetic condition.  I also get many questions from friends who are pregnant.

My initial reaction is always one where I want to just sit them down and counsel them.  I want to give them all the information they’re looking for.  I want to help them.  I love when people I’m close with show an interest in my passion and I want to seize that opportunity.  It also means something to me that they trust me with some of their most personal question regarding their health.

I have a personal rule that I stop and think before I answer these types of questions.  I remind myself to take off my genetic counselor hat and to be a friend/family member first.  I do sometimes give very general and basic textbook scientific information.  I do not counsel a friend’s risk of developing a condition nor do I give them any medical advice.  I have never and will not counsel friends/family members outside of a clinic setting.  This not only protects me, it also protects them.  I cannot provide quality services outside of a clinic setting if I don’t have access to accurate medical information, can’t order tests, and I can’t protect their privacy.

What do you feel your responsibilities are as a genetic counselor outside of “work?”  Do you always wear your genetic counselor hat?  What are our responsibilities when we know we could provide a lot of helpful information?  Do we hold all that information from them and encourage our loved ones to make an appointment with a genetic counselor/geneticist/doctor?  What if they never make that appointment?

What are some experiences you have had?  Where and how do you draw the line between being a counselor and a friend/family member?

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