Wednesday, December 18, 2013

Eternity Runs in the Blood

Amy Boesky, editor, The Story Within: Personal Essays on Genetics and Identity

Female cancers run in Amy Boesky’s family. After her mother and aunt died young, Boesky and her sister chose elective surgery to forestall their own early deaths, a decision with ramifications not only for themselves and their childbearing potential, but for daughters who face the same grim choices. This painful personal history led Boesky to organize this collection, wherein people facing genetic diseases discuss what their genes say about them.

Many authors have spilled much ink over genetic science, and its medical and ethical implications for modern society. Less has been written about genetic patients’ lived personal experience, and little has received widespread attention. Thus, many patients suffering inherited illnesses, and parents passing such illnesses to their children, feel needlessly isolated. This collection should alleviate that loneliness, laying foundations for a community of dialog surrounding genetics’ costs and opportunities.

We’ve long known genetics exists. People comment on which parent a child more resembles, and warn kids about illnesses running in families. But developing science makes absolute knowledge possible where once we had only probabilities. Alarmists bleat of genetic discrimination and eugenics, while optimists praise the dawning era of treatment and prevention. But Boesky’s authors demonstrate the lived truth, for ordinary people, is more complex and subtle than that.

Boesky divides her collection three ways. Her first section focuses on discovering genetic inheritance and science’s broadening diagnostic capabilities. We’ve become increasingly able to identify Alzheimer’s, cancer, Huntington’s, and other illnesses long before symptoms manifest. Does knowing equal a death sentence? When must we test ourselves for difficult, debilitating genetic illnesses? Alice Wexler, whose sister discovered the Huntington’s gene, makes a persuasive case that knowledge isn’t necessarily “the truth.”

Her second section analyzes treatment. Genetic diseases that once spelled inevitable mortality, like cystic fibrosis or hypertrophic cardiomyopathy, are now survivable, if recognized early. But treatments require not only solid science, but a welcoming community. Illnesses like schizophrenia, with its significant genetic component, never get treated, or even diagnosed, when surrounding cultures refuse to discuss them openly. We cannot treat what we cannot acknowledge.

Finally, Boesky turns to inheritance. What does it mean to have children, knowing they’ll inherit illnesses that have no cure, and may suffer physical pain or social stigma? Authors write about the difficulty of having children, knowing they’ll inherit disabilities and terminal conditions. And in one of this collection’s most heartrending essays, Laurie Strongin describes the painful decision to bear another child for the purpose of treating her dying firstborn.

Essays span the ideological map. Many authors come from Jewish backgrounds, unsurprisingly, since Jewish heritage has many diagnosed genetic anomalies. But one of this collection’s most hopeful essays comes from Mara Faulkner, who has learned much about survival and perseverance from her life in a Benedictine order. Authors are rich and poor, theist and skeptic, liberal and conservative, educated and self-taught. Their experience with genetic illness, not ideology, binds them.

Despite this collection’s scientific underpinnings, not every essay approaches its subject equally. Misha Angrist, a working genetic scientist, and journalists like Charlie Pierce and Patrick Tracey, approach their subjects with appropriate precision, and though they don’t do “dispassion,” they certainly emphasize the facts. But Emily Rapp, Michael Downing, and others have little patience for unbiased detachment, spotlighting individual experience. Kelly Cupo most embodies this latter trend, eschewing science altogether.

This collection’s one misfire comes in Joanna Rudnick’s essay about her struggles with BRCA, a female cancer gene. Basically, it isn’t an essay; Amy Boesky interviews Rudnick about her efforts making a PBS documentary about BRCA. That documentary sounds interesting, but the interview feels very Entertainment Weekly-ish. Editor Boesky, who has BRCA herself, returns to this gene as the foundation of her interest, but this article feels misplaced and intrusive.

Boesky’s best essays strike a balance between objective science and workaday participation. Much as we like the idea of knowable reality, reality exists in the tension where we lack knowledge, but must act. And that’s what Boesky’s authors do: they act. They get tested and seek treatment, or embrace unknowing for solid, defensible reasons. Nobody here is a mere passenger on life’s currents; they take command.

Where science treats in testable knowledge, Boesky’s authors offer lived experience, with its sloppy, chaotic tendencies in domains where nobody’s ordeal exactly repeats anybody else’s. Everybody facing genetic illness must reinvent the wheel. While this reality seems imposing, and we water our garden with tears, this collection reassures us that real humans have the ability to face that new reality with dignity and triumph.

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