“Here Is A Human Being,” Redux

I’ve talked here before about why I’m participating in the study, a couple of times! What I haven’t talked about is the book that got me thinking about it at all.

Here Is A Human Being, by Mischa Angrist

Of course, working in healthcare, I had heard about personal genomics. It was on my horizon, something about which I wanted to know more. When I was offered a review copy of the new edition of Here Is A Human Being, At the Dawn of Personal Genomics by Misha Angrist, I thought that would be a great way for me to accomplish that goal.

For context, I’ve written a few book reviews in my past. Enough so, that I have my usual strategy: read the intro and conclusion closely; give attention to the Table of Contents and the index; flip through and do spot checks for chapters or sections or illustrations that particularly attract my attention, read those; extrapolate to the rest of the book. Please note, that for a solicited book review, I rarely actually read the entire book, instead reading enough to get a sense of the overall work. This was different.

Ruth, who sent me my copy, kept gently nagging me to actually write the review. I kept pleading for more time because I wasn’t done yet. I wasn’t making it through more than a page or two at a time. I kept stopping to look things up. Checking the footnotes or citations. These were often incomplete (which, as a librarian, frustrated me NO END!), so I’d break out my phone and look it up myself. Pop the link out to Twitter or send it to myself to bookmark. Prowl a couple related links while I’m there. Then go back to the book. Someone’s mentioned. A name or a company I don’t know yet. Repeat.

This is a slow process. Rewarding, engaging, intriguing, demanding, but not remotely speedy. As you can see from the photo, I’ve been carrying this book around for quite a while now. The actual object of the book is ornamented with papers sticking out of it, embroidered inside with scribbles and underlines and comments and questions, highlighted with wear and grime along the edges from having been a close companion over a period of time. I didn’t just read the book, I immersed myself in it.

For those who don’t want to read the actual “review” part of this, I’m going to interject here the main takeaways that influenced me. As I read this book, there was certain themes that slowly took shape. In the book, Misha switches between telling his part of the story, and conversations or events that involved the key players. In these candid conversations, the leaders in the personal genomics field kept talking about their own reasons why they believe this is important, what they hope will come from personal genomics, the potential impact, the benefits, the barriers. They worry. There are concerns about what happens if people DON’T participate? What if people’s concerns over personal privacy win out over the sharing of data necessary for leaping into a new realm of research and discovery?

They’re talking about a powerful shift in the model of how science is done. And it depends on us. The book doesn’t pound on the issue, but in different ways, different words, different places, different people kept expressing similar concerns. The idea sank in. I found myself concerned about the same ideas. I started hearing and seeing the same concerns expressed in other areas. Gradually, over a period of months, it became clear to me that this — big data, sharing data, personal transparency — are all critical to this paradigm shift in science as well as general knowledge, critical to moving us forward, beyond the status quo into the next level of understanding and learning. And if we don’t, we don’t go forward, but backwards. This is when and why I started to feel driven to get involved, somehow.

Now, about the book. Here is a Human Being really needs to be read like a story, and it also calls out to be read like deconstructing a piece of jewelry or craftwork prior to replicating the design in a new media. It has both a natural flow, and a sense of profoundly subtle (almost invisible) craft and design.

There is no conceptual organizer given at the beginning of the book, like the Dramatis personae or a timeline. There is no cognitive structure to help me understand this is where I began, this is how the book is evolving, and this is the expected path for getting there. My masters research focused on applying an educational technique that was then called an “advance organizer.” The oversimplified rule of thumb was tell them what you’re going to say, say it, and then tell them what you told them. Me, I like to include something about WHY, why it’s important, why it’s valuable information to you, what are *you* going to get out if it. In this case, he might also want something on what the value was to him.

Through reading this, I’ve ended up reading the personal stories provided on a number of the personal genomic corporate websites, but I just can’t trust them. They read a bit fake, like the marketing pieces they are. Misha doesn’t. Misha sounds honest and real. He says, I had these questions, I had these doubts, I had these concerns. I did it anyway. This is why. This is what I found, what I learned, how I learned it.

The book has important, excellent, well-crafted content. It tells a critical story. It tells a complex story. I agree that you don’t need to be a scientist to understand it. However, it doesn’t always include the context to make it easily accessible or an easy read. The story parts read easily, but without the cognitive construct into which to fit the pieces, I am having to create that myself as I go along. I am kind of mentally outlining the book as we go. Just when I think I know where he’s headed, and I settle in to just focus on reading, he changes direction. I react, “Whoa, that isn’t what I expected, what’s going on now?” and I start again digging into footnotes and background research.

My approach to reading this book might have been a mistake. It certainly took long enough! It might be easier to see the most important part of the book, the story. The story only gets more intense and engaging as the book progresses. And it has a worthy ending.


2 thoughts on ““Here Is A Human Being,” Redux

  1. I stumbled across your blog, thanks to Google, while researching MTHFR deficiancy. Reading your initial blog on why you are participating in the study was like reading my own family history. We call it the weird Phillips gene, but never had the true “gene” that causes our issues. While watching a movie, Transcendent Man (http://www.amazon.com/gp/product/B0051Y6NUQ/ref=wtls_list_pr_23), I was inspired to start my genetic search. I had already been a long time geneology researcher, so this seemed the next step, but I was also curious about my medical issues and what I could learn about myself.

    I used 23andme.com for my testing. It has lead to a number of “aha!” moments. The latest being some genetic anomolies. I uploaded my 23andme results in Promethease and got the following information:

    “You have a combination of 2 SNP variations in MTHFR which influence homocysteine levels. This is found in ~20% of people. 0.08% of people had a double copy of a mutation in one of the SNPs, and a single mutation in the other. . gs193 indicates double mutations in both snps, and people with this are believed to be critically impacted. Note that both snps have minus orientation. *rs1801131 is at position 1298 *rs1801133 is at position 677.”

    While I have researched this on the web, I am stumped as to what my next steps should be. I know I want to look at this further since it may help explain the “Phillips gene” my family jokes about, so I am now looking for doctors.

    I agree that this is the next phase of healthcare. I also work in healthcare, but on the administrative side. I see the changes in the horizon and the need for all of us to participate in this change. Being an anomoly in the current healthcare environment, the potential changes with personalized medicine could be a break through for my family.

    • Rebecca, I think I understand. I’ve wished that I could go back and convince my grandfather to eat differently, so that he wouldn’t spend such a long time dying in pain; wondered if my grandmother might have been a kinder, more stable person if there had been vitamins for 5-methylfolate when she was alive, and if she’d known to take them. Maybe my other grandmother wouldn’t have developed cancer. Maybe my family wouldn’t have so many people with diabetes. But the next step, now that the information is available, is for people to want to know, for the docs to know, to translate the information from obscure research articles into something we DO!

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