Reddit reviews Smith's Recognizable Patterns of Human Malformation: Expert Consult - Online and Print

Hello! I have lots of recommendations for you, though, I can't think of much for ethics off the top of my head, except for textbooks. I did take an online class that teaches students about genetic counseling offered by South Carolina and some ethical issues were discussed there. Like you, I also love reading and have found a variety of resources. For starters, this subreddit posts decent articles from time to time, so lurk here!


Textbooks
A Guide to Genetic Counseling: This is like the book for genetic counseling programs. It offers a comprehensive overview of counseling and most ethical things I've read about are through this text.


Facilitating the Genetic Counseling Process: This book is designed to help you learn how to communicate effectively with clients/patients.


There are more textbooks to read about genetic counseling that you can find via Amazon. If you want to learn more about diseases, maybe check out Smith's Recognizable Patterns of Human Malformation.


Online
I have found a few things to read online. In case you haven't heard of it The DNA Exchange is excellent. The writers are great and they tackle a whole host of issues. Two magazines I really enjoy are Genome and Helix.


Also, if you're not familiar with GINA, the National Coalition for Health Professional Education in Genetics (NCHPEG) has a web page that explains it nicely.


Also, Unique has the cutest comic ever that explains rare diseases to siblings. Not to mention, that website has a lot of handouts on rare disorders!


Books
I found out about 90% of these books through the online class I took, which I mentioned at the beginning of this comment. I decided to link and give a few lines of each Amazon description to you so you don't have tab fatigue. Of these books, I have read Waiting with Gabriel and Before and After Zachariah. Both are excellent and raise great discussion points.


Choosing Naia: A Family's Journey by Mitchell Zuckoff - A dramatic and carefully detailed account of one family's journey through the maze of genetic counseling, medical technology and disability rights.


Babyface: A Story of Heart and Bones by Jeanne McDermott - When Jeanne McDermott's second child, Nathaniel, was born with Apert syndrome-a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens-she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family's traumatic yet enriching experience.


Waiting with Gabriel by Amy Kuebelbeck - This memoir is the true story of parents who were told that their unborn baby had an incurable heart condition, confronting them with an impossible decision: to attempt risky surgeries to give their baby a chance at a longer life, or to continue the pregnancy and embrace their baby's life as it would unfold, from conception to natural death.


Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic by Martha Beck - Expecting Adam is an autobiographical tale of an academically oriented Harvard couple who conceive a baby with Down's syndrome and decide to carry him to term.


Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them by Clare Dunsford - Spelling Love with an X is the first personal memoir about living with fragile X and a reflection on the fragility of human identity in the age of the gene. Recalling the psychic wound of learning that she is genetically "flawed," Dunsford wonders: What do you do when you discover that you are not who you thought you were?


The Spirit Catches You and You Fall Down by Anne Fadiman - The Spirit Catches You and You Fall Down explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Lia's parents and her doctors both wanted what was best for Lia, but the lack of understanding between them led to tragedy.


Give Me One Wish by Jacquie Gordon - This is the story of a remarkable mother and daughter and their love as they make sense of life, and their relationship, in the face of a deadly disease. Jackquie Gordon cannot cure her daughter Christine's cystic fibrosis, but she can teach her to follow life's gifts wherever they lead so that she grows up eager to discover the world and her place in it.


Before and After Zachariah by Fern Kupfer - The heart-wrenching story of one couple's courageous decision to have their severely brain-damaged son cared for in a residential facility.


Anna: A Daughter's Life by William Loizeaux - Born with a number of birth defects known as VATER Syndrome, Anna Loizeaux’s chances for survival were uncertain.


Old Before My Time by Hayley Okines - In medical terms her body is like that of a 100-year-old woman. Yet she faces her condition with immense courage and a refreshing lack of self-pity.


Pretty is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied my Destiny by Jessica Queller - Eleven months after her mother succumbs to cancer, Jessica Queller has herself tested for the BRCA gene mutation. The results come back positive, putting her at a terrifyingly elevated risk of developing breast cancer before the age of fifty and ovarian cancer in her lifetime.


There's also Lisa Genova's books. You've probably heard of Still Alice, which is about a woman who is diagnosed with early-onset Alzheimer's. That was a good read! Her other books also deal with various medical diagnoses and I've heard Inside the O'Briens is quite good as well.


I hope this all helps. I apologize for the length, but I really wanted to share what I could! If you're interested, I could give you some ethical dilemmas to think about. I remember a few from interviews and reading about genetics. Good luck. Feel free to PM me if you have any questions about applications/interviews!

Smith's Recognizable Patterns of Human Malformation

The most recent edition is only 3 years old.