Category Archives: books

Best Resources For Your Best Practice ((Anna))

TEXTBOOKS

A Guide to Genetic Counseling (Wendy Uhlmann, Jane Schuette, Beverly Yashar)

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Chromosome Abnormalities and Genetic Counseling (R.J.M. Gardner, Grant Sutherland, Lisa Shaffer)

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Counseling About Cancer: Strategies for Genetic Counseling (Katherine Schneider)

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Genetics in Medicine (Thompson, Thompson)

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The Practical Guide to the Genetic Family History (Robin L. Bennett)

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The Developing Human: Clinically Oriented Embryology (Keith Moore, T.V.N. Persaud, Mark Torchia)

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Oxford Desk Reference Clinical Genetics (Jane Hurst, Helen Firth, Judith Hall)

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Smith’s Recognizable Patterns of Human Malformation (Kenneth Jones, Marilyn Jones, Miguel del Campo)

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How to Talk with Families about Genetics and Psychiatric Illness (Holly Peay, Jehannine Austin)

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Practical Genetic Counseling (Peter Harper)

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Facilitating the Genetic Counselling Process (Patricia McCarthy Veach, Bonnie LeRoy, Dianne Bartels)

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FOR YOUR INTEREST

The $1000 Genome: The Revolution in DNA Sequencing and the New Era of Personalized Medicine (Kevin Davies)

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Far From the Tree: Parents, Children and the Search for Identity (Andrew Solomon)

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Genetic Rounds: A Doctor’s Encounters in the Field that Revolutionized  Medicine (Robert Marion)

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The Emperor of All Maladies: A Biography of Cancer (Siddhartha Mukherjee)

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The Spirit That Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures (Anne Fadiman)

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The Immortal Life of Henrietta Lacks (Rebecca Skloot)

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The Curious Incident of the Dog in the Night Time (Mark Haddon)

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Handle with Care: A Novel (Jodi Picoult)

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Carrier: Untangling the Danger in My DNA (Bonnie Rough)

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Must Read Interview: Psychiatric Genetic Counseling. ((Anna & Sarah))

Interview with Anna: Psychiatric Genetic Counseling 

Sarah: How did you become interested in psychiatric genetic counseling?

Anna: I have a BA and an MA in psychology, and was always fascinated by psychopathology. After I completed my MA in Vancouver, British Columbia and started looking into genetic counseling, I came across Dr. Jehannine Austin’s research group. In her research, she uses a clinical genetics approach to understanding mental illness. I found that her research allowed me to incorporate my interest in psychology with my interest in genetics.

S: How were you able to obtain a psychiatric genetics rotation last summer?

A: Dr. Austin had launched the psychiatric genetic counseling clinic a few months before I moved to New York to complete my genetic counseling degree, so unfortunately I didn’t get the chance to observe any sessions. They had taken 2 summer students just as I was leaving, and I was told to keep my eyes open for the following summer. When I found out about the position, I jumped at the chance to work with the team again and to learn more about the clinic.

S: What was one of the biggest differences you noticed when counseling in a psychiatric genetics clinic?

A: For one, they don’t offer genetic testing. Second, the session is extremely psychosocial driven, which makes it longer. I also saw the amount of guilt and shame people experienced when discussing their mental illness, or the mental illness of a loved one. There is so much stigma people face so it’s not something many people talk about. Maybe some think that if no genetic test is offered than what point is having a clinic like this? But I got to see some dramatic changes in peoples’ beliefs about what causes mental illness and how they can protect themselves. I also got to witness a ton of weight lifted off people’s shoulders as they came to terms with the fact that they did not cause their child’s mental illness. That is huge!

S: What are some the mostly “highly genetic” psychiatric conditions?

A: That’s a difficult question to answer. I think with mental illness in particular it’s very multifactorial. However, I don’t think people realize that we all have the capacity to develop a mental illness. This is because we all have some genetic predisposition that we are born with- some more than others- and it’s the different experiences we go through that can determine whether one person goes on to develop a mental illness or not. Someone with a strong family history of mental illness may have a greater vulnerability than someone with less of a family history. But genetics is not destiny and there are things we can do to protect ourselves from getting sick. We do have control and I think that’s an important message for people.

If we see someone with developmental delay and psychosis genetic testing is offered for 22q11 deletion syndrome (DiGeorge), because 22q11 is the greatest risk factor for developing schizophrenia.

S: What other types of health care providers are vital for a Psychiatric Genetics Clinic?

A: Many of the patients we saw were referred by their psychiatrist or psychologist. But the nature of the clinic accepts self-referrals as well, so any health care provider could refer their patients. But it’s really important to have other medical professionals on board because there is a genetics component to mental illness and this clinic really helps people understand that involvement.

S: What did you enjoy most about a multidisciplinary clinic environment?

A: I think working in a multidisciplinary environment is great because you can learn so much from your colleagues. It also allows me to appreciate what patients go through when they see all these specialists; I can be more compassionate because it can be frustrating having to coordinate and attend a bunch of appointments.

S: What is it like to counsel someone with a psychiatric condition? Are there some unique strategies you use/saw utilized in clinic?

A: Honestly, it didn’t feel any different than counseling someone without one. The biggest thing for me though was trying to break down their misconceptions about mental illness and all the internalized guilt and shame. I also very much appreciated that people were willing to discuss their mental health with me- a complete stranger. It’s such a sensitive topic but when you give someone a safe atmosphere to open up, it’s amazing how liberating it is for him or her, and for yourself.

I found it really beneficial for patients when we used diagrams. The flipbook we used illustrates “mental illness jars,” which help explain everyone’s genetic predisposition.  ((S: This “mental illness jar” illustration can be found in Dr. Austin’s book, which is noted below… at the top of page 91!))  It helped people visualize what having a genetic vulnerability means and how environment contributes to one’s risk. Also, we allowed the patients to explain their story to us. Why did they think they got sick? What do they think caused their mental illness? And what are some things they do to protect themselves from having a relapse or getting sick in the first place? The sessions were very patient driven, which was nice.

S: What are some “take away points” people should keep in mind if they want to go into counseling patients who have a personal or family history of a psychiatric condition. Or some pros and cons regarding the field, in your opinion?

A: I think it’s really important for counselors to know that it isn’t difficult to counsel people with mental illness. And it is very important not to brush over or skip the psychological assessment on patient intakes. We can’t be afraid to go there with our patients. Our brain is an organ like any other organ in our body. And when our brain doesn’t work as it should, we take medication or go for therapy. That shouldn’t be any different than taking insulin for diabetes or heart medication etc.

I think a big pro of discussing mental health with patients is creating that dialogue about mental illness and creating a greater awareness. Hopefully that will reduce the stigma, shame and guilt people experience. Unfortunately, I think that it has been somewhat of an uphill battle because the genetics of mental illness is so complex. There is no quick fix, easy answer or blood test we can offer, and that can be hard for some people.

I think that it is important for health care professionals to understand that we all have our patients’ best interests in mind and that takes a multidisciplinary approach. And sometimes it’s not about what test we can administer or what drug we can prescribe. Sometimes all it takes is just someone to listen, and as genetic counselors, I think that’s one of the things we do best.

Those who are interested in learning more about counseling people with mental illness can read Dr. Austin’s book: How To Talk With Families About Genetics And Psychiatric Illness.

((Huge thanks to Anna for the interview, very enlightening!  Hope you all enjoyed this post and her answers as much as I did! –Sarah))

Tagged

Show & Tell ((By Olivia))

Olivia here. Contrary to what it seems, I do still exist! Here’s a snippet of what I’ve been up to during my hiatus.

1. Finished the book The Boy in the Moon by Ian Brown

I heard about this book I believe from NPR (check out this episode of Fresh Air interviewing the author) last summer and purchased a digital version of the book to read on the subway. When I began reading it waaaay back in August (Thompson & Thompson took priority somewhere during that time!), I had had no exposure to life with a severely disabled child and I thought this might provide in-depth insight. Brown’s book chronicles his experience raising his son, the affects it has had on his family, and his personal desire to find meaning and reason in his son’s existence. The book expands to a greater exploration into the lives of the disabled, families like Brown’s who have succeeded and struggled to provide for their children, and the people who have advocated for appreciation, acceptance, and basic rights for the severely disabled.

Check out this excerpt from the NYTimes.

2. Followed blogged adventures of international genetic counseling in Guatemala

I didn’t go anywhere exotic this spring break, so I’ve been living vicariously through the GenetAssist Team Blog as they explore this beautiful country, learn honored cultural beliefs, and educate midwives, women, and teens about basic genetics and prenatal care. Formed in 2011, GenetAssist Team consists of inspired students, alumni, and their program director who hope to expand the access to genetic counseling services to all nations.

3. Listened to Patient Voices for a personal perspectives on life and living

WARNING: This is addicting and may detract from studying (nerd alert!) But, it is a form of studying, no?

Patient Voices is a collection of recordings and images from patients who have health problems, be they genetic, chronic, psychological, that have affected their lives for better or for worse. They can make you laugh and cry in the same session and I love that many different people are featured. It shows the diversity of people who can be affected, as well as the variability of symptoms within each disorder.

4. Playtime at Gigi’s Playhouse NYC

I went with a classmate earlier this week to have pizza and playtime with the folks at Gigi’s Playhouse in Harlem, which is a nonprofit play and meeting space for families, siblings, and children with Down Syndrome. Before going, I checked out their site and thought that the concept was fantastic; why aren’t there more places like this out there?! It seemed like a place of common ground where both the parents and the kiddos can relax and have fun. The NYC location is kind of new, but I’m sure that their base will grow as the word spreads about the support and friendship that’s been found at Gigi’s Playhouse NYC!

2¢ on …. Still Alice ((by Jade))

I finished another reading-list book last week, Still Alice by Lisa Genova.  And – the verdict – it is actually my favorite reading-list book to dateThe novel recounts Alice’s descent into early onset Alzheimer’s disease at the age of 50.  At the time, she is a renowned professor of psychology at Harvard University, happily married, a mother of three, and a frequent traveler.  The clues are subtle: Alice forgets a key word during a speech, she cannot remember the name of someone at a party, she gets lost during a routine jog, and she fails to recall the significance of items on her to-do list.

As the book chronicles the slow and subtle progression of the disease, Alice eventually seeks medical attention and attends a genetic counseling appointment.  Alice tests positive for early onset Alzheimer’s disease (EOAD).  An intelligent woman to begin with, Alice struggles to maintain the use of her brain and shield herself from an embarrassing downhill drift.

A word on EOAD: EOAD can manifest between the ages of 30-40, but may be more common in the 50s. EOAD typically runs in families and some of those with EOAD have a mutation in one of three genes: APP, PSEN 1 and PSEN 2.   

From a psychosocial stand-point, the book portrays the difficulties associated with loss of professional status, marital stress, child-parent interaction, genetic susceptibility in children, and – of course – grief, loneliness, resiliency, despair, and so on.  Of her three children, two opt for testing.  One daughter tests positive and utilizes PGD for her pregnancy.

I loved this book like I loved The Curious Incident of the Dog in the Nighttime – you really get in their heads, understanding a disease from the inside (The Curious focuses on  autism spectrum disorder).  The effect imparts a new sense of empathy.  The following is an excerpt of Alice’s speech during an Alzheimer’s conference:

“We, in the early stages of Alzheimer’s, are not yet utterly incompetent.  We are not without language or opinions that matter or extended periods of lucidity.  Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives.  We feel like we are neither here nor there, like some crazy Dr. Suess character in a bizarre land.  It’s a very lonely and frustrating place to be…..

Please not look at our scarlet A’s and write us off.   Look us in the eye, talk directly to us.  Don’t panic or take it personally if we make mistakes, because we will.  We will repeat ourselves, we will misplace things and we will get lost.  We will forget your name and what you said two minutes ago.  We will also try our hardest to compensate for and overcome our cognitive losses……….

I encourage you to empower us, not limit us.  If someone has a spinal cord injury, if some one has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses.  Work with us.  Help us develop tools to function around our losses in memory, language and cognition….”

Links:

Alzheimer’s Association

Dementia Advocacy and Support Group

2¢ on …. The Spirit Catches You and You Fall Down ((by Jade))

Note: Olivia and I have adopted the title “2¢ on…” to refer to any book reviews we post on m&g.  We might expand this to other topics on which we decide to write an opinion piece!

You’re never too old for summer reading.

Hold the phone: I’m not about to pose thumbs-up on a READ poster just yet.  “You’re never too old for summer readingis actually my program director literally letting us know we have a summer reading list.  OK, fine, but I’m still going to watch Jersey Shore.

The first book I dove into was The Spirit Catches You and You Fall Down by Anne Fadimon, which chronicles the epileptic illness of a young Hmong girl named Lia Lee.  The novel highlights the collision between Hmong culture and Western medicine as Lia’s immigrant family struggles to understand and appease American doctors while upholding their own traditions and medical ceremonies.  At the heart of the clash is the simple fact that illness is not a uniformed concept.  What the doctors refer to as epilepsy, the Lees attribute to “soul loss” – and, on one side of the world, the cure is medication, on the other, it’s animal sacrifice and a host of other rituals.  But since they’re on the Western half of things, the novel depicts a both frustrating and heart-warming tale of caring for a patient and daughter who is loved so greatly, yet caught in the cross-fire.

Before The Spirit Catches You, I had zero familiarity with the Hmong, an Asian ethnic group from the mountainous regions of China, Vietnam, Laos, and Thailand (kudos, Wikipedia).  The book taught me that the Hmong have always been “fighters” in a sense that, while seemingly always kicked out of their homelands by expanding nations, the Hmong have fought to stay unified and in-line with their own culture, even if forced to continually re-locate.  Thousands of Hmong were admitted refuge into the US after assisting in the “Secret War” in Laos, a part of the Vietnam War.

This book also made that funny thing happen where – you know – you learn about something you’ve never heard about before, then, all of a sudden, that thing is everywhere.   Since reading about the Hmong in The Spirit Catches You, I caught a part of the Clint Eastwood flim, Gran Torino, on TV, which centers on Hmong living in the US.  Later this summer I read The Lost Girls by Jennifer Baggett, Holly Corbett and Amanda Pressner.  The authors chronicle their year-long roam of the world and frequently describe meeting Hmong villagers or using Hmong tour guides in East Asia.  I even stumbled upon a Hmong blog after doing some post Spirit research.

As for the take-away message: well, I’m certainly more informed about a culture I had previously been blind to.  The book not only provided cultural insight, but also accorded a level of confidence, a sense of cultural understanding and the acumen to relate to a different people.  Additionally, the book served as a reminder of cultural rifts and the essentiality to negotiate between worlds, rather than remaining stubbornly steadfast to “Western education” – counseling, education, diagnosis, care…they all need to be approached with a sense of relativity and compassion.   Always investigate first how a person views his or her own illness.

photo credit: flickr creative commons/John Pavelka

OK, real talk: But how was the actual book? In all truthfulness, a tad drawn out and a tad too journalistic for my taste.  I learned a lot but was not absorbed completely.  The story itself had a lot to offer, but it was hidden beneath one too many pages of historical references, cut and dry interviews, and choppy plot-jumping.  It was a good book, but no great book.  I’d rather watch Jersey Shore (now there’s some cultural insight!).

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