Another year, another list of great books. I loved my mornings with coffee and ready. I also listened to many audiobooks through the San Francisco Public Library. Below are my top 10 (in no particular order):
-
Mission High (Kristina Rizga). This book tells the story of how Mission High in San Francisco, CA teaches to student potentials, while failing at traditional metrics such as testing. It also discusses why in one of the richest cities in one of the richest countries still continuously fails students.
-
Transcendent Kingdom (Yaa Gyasi). This book pulled on my heartstrings as a PhD student. Its main character goes back and forth between her personal life with her mom and brother, a drug addict, and her work in the lab, trying to figure out drug addiction. The ying and yang of research and ‘real life’ was very relatable to me.
-
Klara and the Sun (Kazuo Ishiguro). This was my favorite fiction book of the year. It tells the story of a child with her friend set at some point in the future. While it is science fiction, it hits a little too close to home.
-
Braiding Sweetgrass (Robin Wall Kimmerer). This book helped remind me that there are thousand of different ways to look at and answer a question. Dr. Kimmerer is a native scientist who teaches her student and her children to really understand the world around us, rather than just getting the answer ‘correct’.
-
The Invisible Life of Addie LaRue (V. E. Schwab). If you like time traveling, this book is for you. Addie makes a decision in a felting moment that changes her life forever. And for a long time she is satisfied, until she realizes what she is missing.
-
Bravey (Alexi Pappas). ‘run like a bravey, sleep like a baby, dream like a crazy, replace can’t with maybe’ There are so many great nuggets of wisdom in this book. This was my favorite non-fiction book of the year. While I relate to Alexi as a runner, this book is about so much more.
-
ACE: What Asexuality Reveals About Desire, Society, and the Meaning of Sex (Angela Chen). This book re-introduced me to what it means to be asexual and how that is on a spectrum. It also has some great commentary on what sex means in our society. We tend to go from being told that sex is bad to being told that sex is good as we grow up without really thinking about what that does to our psyche.
-
A Little Life (Hanya Yanagihara). This book centers around four friends who meet in college, following one individual in particular. It discusses how love tries to conquer trauma and chronic pain. Warning: This book has a fair amount of sexual violence.
-
Harry Potter and the Prisoner of Azkaban (J. K. Rowling). A classic. This was done via audiobook, which in my opinion, is the best way to ‘read’ a Harry Potter book. Jim Dale is the best.
-
Angela’s Ashes (Frank McCourt). I remember my Dad reading this book when I was very little and have always wanted to read it. What a story about what children pick up on and remember. It is narrated by Frank throughout his childhood and discusses his observations of his parents, siblings, relatives, and friends.
The amazing books I read in 2020 got me through some dark moments. I always looked forward to weekend mornings, drinking coffee and reading my latest book. I also listened to many audiobooks through the San Francisco Public Library. Below are my top 10 (in no particular order):
-
Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital (Sheri Fink). This is the story of Memorial Hospital in New Orleans immediately after Hurricane Katrina. Patients, staff, and some family members were left to fend for themselves after loosing power and running out of medication. Some patients are euthanized in an effort to save others. It is a story of horror, resilience, and sadness. Read January 2020 while on winter break in Boston.
-
A Gentleman in Moscow (Amor Towles). This novel is all about character development of the funky people who live and work in a hotel in Moscow during the Stalin era. It started off very slow, but then I didn’t want this book to end. Read in September 2020.
-
The Autobiography of a Transgender Scientist (Ben Barres). This book is a heartwarming story of Dr. Barres, an amazing neuroscientist and human. He describes his life, his gender transition, and through it all his passion for science and gender equity in science. Read in March 2020, right during the first shutdown.
-
The Book of Longings (Sue Monk Kidd). This historic fiction novel is about Jesus’s wife, Ana. She is smart, witty, and rebellious. She struggles between supporting her family and carving her own path. I never wanted to put this book down. Read in October 2020, mostly in Yosemite National Park.
-
Hidden Valley Road (Robert Kolker). This book mixes narrative non-fiction with fact non-fiction. It is about a family where 6 children come down with Schizophrenia. The book goes back and forth from the family caretakers point of view to the history of the research and treatment of Schizophrenia. Read in November 2020.
-
Running Home (Katie Arnold). This is a beautiful memior about life and death by an ultrarunner and Outside Magazine writer. While the book is centered around running, it is not about running. It tells the story of Katie letting go of her Dad and remembering the good and the bad of his life. Read in June 2020 right after the loss of my Aunt Eleanor.
-
The End of Your Life Book Club (Will Schwalbe) This is an inspiring story of a son and his dying mother, two avid readers, who form a book club. Every chapter is on one book and it inspired me to keep reading this book and others. It also talks about how to continue living when someone you love is dying. Read in July 2020 after the loss of my Aunt Eleanor.
-
Zeitoun (Dave Eggers). This is a historical novel about the aftermath of Hurricane Katrina. It is based on the true story of a Syrian-American man who stays and helps after the levees broke in New Orleans. It mixes the horror and rage of that period along with what is still prevalent in our society, racial bias and discrimnation. Read December 2020.
-
So You Want To Talk About Race (Ijeoma Oluo). I read this book, like many others, after the murder of George Floyd. I read multiple books on race, each of which had a slightly different perspective and I think many people gravitated towards different ones. This one just spoke to me. I could relate to it. I had been that white person in many of the situations described. I thought it was so insightful, I read it twice. Read June 2020.
-
Nothing To See Here (Kevin Wilson). This is a hilarious and sad short novel about two kids at the center of a messed up family. It mixes complicated family and friend relationships and shows so clearly how we all just want to be loved. Read December 2020.
Science and medicine is dependent on data. Data is why we can state something as a fact or theory rather than an opinion or hypothesis. The more data you have proving your theory, the evidence you have, and thus the more confident one can be in recommending a treatment or outcome. Often people talk about evidence based medicine. This evidence comes from data generated from clinical trials.
While a lot of data has been amassed thus far, there is much more that we do not know in medicine and science. This is especially true in the cancer genetics field, as this field is still new. To obtain the real benefits from precision medicine, we need more data to generate new evidence.
There are over 80 million single base variants that can occur in DNA. If we included additional variants that involve more than one base, there are countless. Due to the number of different variants that can occur in one cancer, there is a lot more data that is needed. In addition, there are thousands of different clinical courses that one can take, which once again increases the amount of data we need.
Increasingly, cancer patients are getting their tumor sequenced as part of their clinical care. But, often that data is not assessed into public or research databases. In the world of cancer risk, where patients get tested for BRCA1 or BRCA2, this data has started to be pooled into public databases, such as ClinVar. While these databases are still growing, they have provided an incredible resource to geneticists, which helps patients, family, health care providers, and payers. This database grew out of multiple parties donating data. This database is continuing to grow with different parties donating information, including Atena Insurance, which requires any test they pay for clinically to be donated to ClinVar. In addition, only recently has there been any consensus on how to classify these variants, such as pathogenic, potentially pathogenic, ect.
However, there is no central public database in cancer genetics. While there are efforts to share data, such as the Cancer Genome Atlas, the International Cancer Genome Consortium, Foundation Medicine Database, and the Cancer Gene Census by GA4GH, this data has limited clinical characteristics. For us to know how changes in a tumor’s DNA determine clinical outcome, we must have data from both the genetics and the clinical data. There is no way for patients, payers, or providers to donate data. Nor is there a way to systematically label these patients, although there are multiple groups working on this.
According to Article two of the 1948 Universal Declaration of Human Rights, every individual has the right to ‘share in share in scientific advancement and its benefits’. Moreover, healthcare data is a common good. Common good is something that benefits society as a whole, compared to a private good that only benefits individuals or a section of society. Everyone has alterations in their DNA. Everyone will have some illness at some point in their lives. If we pool and use medical and genetic data, this is going to benefit everyone in our society.
As patients, as a society, as payers, as healthcare providers, we need to move the field to share and pool cancer genetic and clinical data. We need to #FreetheData.
To my Democrat friends
Multiple tears streamed down my face as I went to bed on Tuesday night. I thought that history would be made Tuesday night. History was made, but not the history I was hoping for.
As the day progressed on Wednesday, the social media posts about the election upset started to increase. Then the protests started with people chanting, ‘Not my President’. Then there were stories about how to change the outcome of the election by having portions of the electoral college change their vote from Donald Trump to Hillary Clinton.
Now, think back to a couple of weeks ago when President-Elect Trump stated he might not accept the outcome of the election. Democrats went MAD. Respect the system, respect the process, respect the country. The President-Elect was saying that it was a rigged system, and we all said no. It is fair. It is truthful. It has seen us through many elections in the past and it will continue to in the future.
We need to accept the election. We live in a democracy that voted and chose him. We cannot change something that has already happened. We cannot manipulate and buy the electoral college votes to rig the election in our factor. That is what dictators who rig elections do.
We should be upset about the things the President-Elect said, upset about his policies. We need to focus on fighting the bigotry that has overwhelmed our county. We need to protest and protect our fellow citizen’s rights. We can and SHOULD productively work for things you believe in. We can volunteer for an organization. We can make sure people going to Planned Parenthood are safe. We can stand up for our Black and Brown neighbors. We can plant a tree. We can recycle. We need to move forward and make the best country we can with the cards we have been dealt.
But we cannot try to change the outcome of this election. He is our President-Elect. Now is our time to reflect, talk, listen, and learn.