Misha Angrist asks himself a similar question in his new book, Here is a Human Being. Then again, he had a really good reason to give pause.
As subject number four of the Personal Genome Project (PGP), Dr. Angrist consented to make his genome sequence and medical history completely open and accessible to the public. Why would anyone do that?
It’s a question that many others have already asked and that Angrist attempts to answer throughout his genomic journey in the book. In short, he “thought the PGP might actually help make a difference.” George Church, a Harvard University molecular geneticist and member of the 23andMe Scientific Advisory Board, started the PGP with a goal to make personal genome sequencing “more affordable, accessible, and useful for humankind.” To facilitate this goal, Dr. Church required each of the ten original volunteers to post genotype and phenotype information online for anyone to access.
Angrist reports that the availability of information would enable individuals to better explore the relationship between genes and medical records or non-medical traits and serve as a social experiment about what privacy compromises might ensue. Considering the risk and uncertainty these PGP participants faced, my hesitation over my private results seemed a bit trifling in comparison. Misha Angrist reasons that “unless we get hit by a bus or succumb to an infectious disease, eventually almost all of us are going to be the numerator, the ‘one in’ something — cancer, heart disease, diabetes, Alzheimers.”
While at first this viewpoint might seem slightly morbid, after it settles it is simply logical and realistic. After all, there is no such thing as a “perfect” genome.
Angrist believes that “[o]ne of the promises of personal genomics is that it will tell us exactly what we are at risk of becoming the numerator for.”
In other words, personal genomics will provide individuals with a certain level of knowledge that will enable them to take a more active role in their medical care and a more directed path for disease prevention. At the end of the day, genetic test reports are not deterministic but are instead pieces of the data puzzle that make us who we are, including our vulnerabilities and imperfections.
Similar to Angrist, 23andMe believes that individuals have a right to know their genetic makeup and we hope that access to this data will inspire and empower individuals to take more control of their health management. Although the successful PGP sequencing of his whole genome is repeatedly delayed throughout the book, Angrist slowly builds his genetic profile through various alternative efforts.
Here is a Human Being chronicles Angrist’s mental process of anxiety, knowledge, and acceptance as he reveals excerpts from his many genomic reports. At the beginning of his journey, Misha Angrist writes from the perspective of a researcher eager to play subject in an influential study. However, throughout the book, Angrist transforms from objective scientist to someone with a personal investment in the outcome. Even Angrist himself was a bit surprised by his initial uneasiness when he first encountered his personal data.
Some, but not all, 23andMe customers may experience this “moment of hesitation” before unlocking their genetic vaults, but anecdotal reports tell us that most individuals receive the information rather well.
In Angrist’s case, he found his genetic data to be “a convenient excuse to begin to get [his] cardiovascular act together.” While 23andMe customers do not have to ponder the broad sharing implications of the PGP, many of the topics woven throughout Angrist’s genomic quest are relevant to the direct-to-consumer space.
Some of the highlights include discussions of work by neurologist Robert Green from Boston University who studied individuals’ reactions to knowledge of their genetic risk for Alzheimer’s Disease (based on his studies, people generally cope pretty well), legal implications of patenting gene discoveries (still under review), and conversations about the field of medical genetics (it needs an overhaul, according to some), just to name a few. 23andMe customers may also enjoy Angrist’s brief description of his visit to our (former) company headquarters, his educational snippets about DNA jargon (what the heck is linkage disequilibrium, anyways?), and his discussion of genetic ancestry (including a shout-out to 23andMe’s Relative Finder tool).
Overall, Here is a Human Being is an honest, humbling account of one man’s journey through the ultimate self-discovery: personal genome sequencing. With his wry sense of humor and interesting anecdotes, Misha Angrist creates an approachable and engaging story about genetics, sequencing technology, and the brains behind the industry. By sharing his journey, Angrist takes a step towards reducing the uncertainty and accompanying anxiety that often plague the personal genomics space.
Here is a Human Being reminds us “that there [is] someone–an anxious middle-aged dude with a wife and two kids, susceptible to metabolic syndrome, plays a crude approximation of guitar in a rock band–behind those cells, that tissue, those brain scans, and that DNA.”
In the midst of all the controversy, sometimes we speak so much of genes in the abstract that we forget that genetics is personal… it doesn’t get any more personal than the blueprint of what makes you you.