Guest post by Amy Boesky
As a professor of literature, I have long been interested in habits of “collecting.” What does it mean to gather together disparate works, either in a poetry miscellany (the early modern version of an anthology) or in a museum? What can be learned through such organization and arrangement? The process of such gathering is, in and of itself, both fascinating and (at times) troubling. Why this and not that? What kind of “whole” does a gathering of pieces imply?
This question has been on my mind as I’ve worked over the past few years to bring together a collection of personal narratives on a range of disparate genetic conditions, written by individuals whose strongest commonalities could be argued to lie in their differences. Writers in The Story Within come from many walks of life. Some are academics. Some are taking the first steps in their careers; others are near retirement. One is a geneticist. One lives in a Benedictine order. Several have become (largely unwittingly) full-time activists, fighting on behalf of illnesses they had never heard of until they affected their children.
In 2010, after I published a memoir about my family’s experience with BRCA1, the so-called “breast cancer gene,” I began receiving letters from readers eager to share their own stories of living with hereditary disease. Surprisingly, many of these letters came from people outside the BRCA community, and in the months after my book came out, I became increasingly curious about the lives and experiences of people living with genetic predispositions or conditions markedly different from my own. I had come to know all too well the anxieties and issues associated with BRCA mutations—concerns over whether and when to be tested; over the control of BRCA testing and its high price; over the release of data stored for years by the company that previously held patents on those mutations. I knew well the debates and worries over clinical intervention—how extreme? At what age? I was deeply familiar with some of the psychological scars associated with passing down a markedly high genetic risk to children.
What I didn’t know is what life is like for people facing genetic illnesses markedly different from my own—conditions such as Huntington’s, or Alzheimer’s, or less well-known (but still significant) diseases where no known clinical intervention is yet available. In working to put together this new collection of essays, I became increasingly struck by the fact that while we differ in important ways as a group of individuals and writers, there are important notes that we each sound about these issues. Bringing a group of us together to write about these experiences, I believe, works not to impose sameness or artificial order on our stories, but instead to highlight the subtle yet critical ways in which these narratives alter and shape each other.
This week, many of the contributors to The Story Within will gather in Boston to talk about issues we see as most important when it comes to assessing genetic susceptibility, intervention, and familial legacy. How do we feel about the possibility of learning the results of genetic testing, if it is available for the condition we face? How would we feel about making this information known to others? How do we think about intervention, if in fact we do?—is it conceived of clinically? Politically? Philosophically? What do we think (and feel) about children—to what extent are our ideas of “genetic inheritance” shaped by our concerns about what we’ve passed down?
We plan to come together not to impose order on any of these questions, but instead to provide the opportunity for further conversation and debate. So much of what is known about the impact of genetic mutations on our lives gets reduced these days to numbers, phrases, or “diagnoses.” Those of us whose lives have been importantly shaped by such information recognize the danger of relying on a single narrative (or perspective) to contain or direct such complex issues. Our hope, in other words, is that our collection truly represents complicated, multiple, and at times competing points of view. Rather than offering the last (or even final) word on this subject, this group of deeply personal essays hopes to offer insights into how varied we are as people, and how productive debates on these topics can be.
Amy Boesky is an associate professor of English at Boston College and editor of The Story Within: Personal Essays on Genetics and Identity, published by Johns Hopkins University Press.
Filmmaker Joanna Rudnick, a contributor to The Story Within, wrote about the importance of sharing the data of mutations that can cause hereditary breast and ovarian cancer. That Huffington post article can be read here .