I’m being treated for cancer and was referred to a genetics counselor. He informed me that because two other people on my side of the family have also had cancer, I’m eligible for screening for BRCA mutations, which increase the risk of breast and ovarian cancers. But I’ve decided against it because it won’t change my treatment and I don’t want the prophylactic surgeries typically recommended. For my mental health and quality of life, I prefer not knowing. Though I don’t have children, I do have siblings, including a monozygotic — or identical — twin, which is something I’ve also taken into consideration.
I believe I should inform my family about our eligibility for genetic screening without specifically mentioning BRCA to avoid panic. My plan is to tell my siblings, aunts and uncles that we have a sufficient history of cancer in our family to qualify for genetic testing and that they should discuss it with their doctors if interested. I would offer to share more details from what the counselor told me and let them decide what to tell their adult children.
Does this approach seem reasonable, or am I obligated to share specific details with all potentially affected family members? — Name Withheld
From the Ethicist:
Dealing with these decisions isn’t easy while undergoing cancer treatment. But yes, it’s completely understandable to hesitate about genetic testing that won’t change your medical care, especially given the weight such information carries. Your doctors are already monitoring you closely.
People often worry about BRCA1 and BRCA2 mutations, which raise breast-cancer risk in women who have them to about 60 percent over a lifetime, compared with 12 percent without them. These mutations also increase risks for ovarian, pancreatic and prostate cancers. But having two relatives with cancer doesn’t necessarily mean you’re likely to carry a BRCA mutation. Unless your family’s cancers occurred at unusually young ages or were types specifically linked to BRCA, the odds remain low. Only about one in 400 people in the general population carries these mutations; among people of Ashkenazi Jewish ancestry, it’s one in 40, but still the exception.
At the same time, learning that they carry a BRCA mutation can motivate people to pursue earlier screening and potentially lifesaving interventions. There’s a reason that such screening is made available. There’s also a reason that it’s a decision. By informing your relations that your family history qualifies everyone for genetic screening, and suggesting that they speak with their doctors if they wish, you’re encouraging them to make their own informed decisions. You’re not hiding information; you’re offering support and leaving the door open for more conversation if they want it. In short, you’ve thoughtfully balanced your own care with consideration for others. May that approach guide you in all that lies ahead.
A Bonus Question
In my research of a musician who died, I discovered that she dissembled about her age, making herself five years younger. Her secret was supported by her husband, who gave the false information to her obituary writer and had the wrong dates engraved on her gravestone. Now that the husband has passed, too, their papers were acquired by a major university, and the false birth date appears in the catalog.
As a librarian, I strongly believe that information in a library and other authoritative sources should be accurate, and for this reason I am considering forwarding the documentation I discovered to the university so that it can make the correction. It’s obvious to me, however, that neither the musician nor her husband would have ever wanted this secret to be revealed, and so my question is whether it is more ethical, in respect of their wishes, for me to just let it be. — Name Withheld
From the Ethicist:
Librarians and archivists are guardians of truth in a world that often prefers a good story. This musician, with her husband’s help, shaved five years off her age, a white lie that darkened as it made its way into obits and a gravestone and now the catalog of a university archive. The two of them no doubt had personal reasons for concealing her true age — maybe to dodge ageism or to sell an image of youthful talent — and then, naturally, reasons for concealing the concealment.
But their decision to perpetuate a deception doesn’t obligate you to uphold it. It’s their baggage, not yours, and they’re no longer around to be embarrassed or reassured. Researchers frequently unearth new facts, flattering or not, and their duty is to ensure that future scholars aren’t misled, not to make the dead look good. It’s historical hygiene. You’ve got the receipts; burying them would be an active choice to protect their pretense. So set the record straight. Doing so is how you honor the complexity of her real life.
Readers Respond
The previous question was from a reader frustrated with a member of her book club who wasn’t doing the reading and was passing off online reviews as her own. She wrote: “I am a member of a lovely, well-established book group of very thoughtful, well-read women. Recently I’ve become aware that one woman, whom I see socially outside the group, often doesn’t read the books, but instead relies on reading online reviews for a perspective about them. She then speaks with great authority at the meetings, as though those are her personal opinions, without crediting the source and without admitting that she didn’t read the book. In the days before a meeting, she will casually share with me that she ‘couldn’t get into it,’ but she never says so to the other members. I sit there steaming but don’t reveal her duplicity. What would you do?”
In his response, the Ethicist noted: “The first rule of book clubs is that someone will always show up having read only the first chapter and the last page, armed with three profound observations from Goodreads. Your job, in any case, isn’t to police her page turns. Cast yourself as the enforcer, and you betray the spirit of a group dedicated to forging connections through stories.
Instead, consider pulling her aside after the next meeting. Let her know that her own reactions to the text will mean more than the stuff anyone can find online — that she’s depriving the group of her own authentic response.
The goal isn’t to humiliate her; it’s to steer the energy toward what matters: the strange, messy business of human beings encountering a book and trying to make sense of what it has done to them. Keep the focus there, and maintain your small, imperfect community.” (Reread the full question and answer here.)
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For the book group I belong to, there isn’t a meeting that goes by without someone who hasn’t had time to read or to finish the book. However, the nonreader of a particular book may hear something about it during our discussion that makes her curious and want to read it, so we simply don’t care. Every group member has demands on her time, and we all make allowances for this fact. We all treasure our group, and we feel that censuring someone for not completing this voluntary “assignment” would be immaterial and inappropriate. — Ariel
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Many book clubs provide the comfort of social connection and a much-needed feeling of belonging. There are always people in every book club who either hate every book or never read them. The nonreading woman is clearly motivated to attend the book club get-togethers, so why rob her of the experience and judge her so harshly? There maybe private reasons her friend is failing to read the books — affordability of reading glasses, cognitive decline, excessive home duties, access to the book. There is no actual harm being caused by the nonreader attending the book club, but a lot of harm could be caused to her by naming and shaming her in front of the group. — Cassandra
I found it interesting that the book club member’s instinct was to “out” the nonreader as opposed to calling her out in the private moment when she shares that she didn’t read the book. Wouldn’t that be an easier, less aggressive way of chatting about the issue? Maybe she could encourage her to chat at the next meeting about why the book stunk, and she didn’t want to bother reading it? That, too, could make for an interesting and honest book club discussion! — Michelle
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I’m also in a book club, and every month about two or three people don’t finish the book. They couldn’t get into it, didn’t have enough time, didn’t like the book to begin with — the usual. I wonder what kind of environment your book club is cultivating where people don’t feel comfortable admitting that they couldn’t finish the book. — Leonardo
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Is she old enough to be experiencing dementia? The ability to read and process the entire book could be impossible for her, yet she wants to maintain the fellowship and connection to the group. But anyway, so what? She researches, she stimulates the conversation. That’s what you want in a good book-club member. Give yourself a gold star for reading all the books, and keep your mouth shut. — Darr
Kwame Anthony Appiah is The New York Times Magazine’s Ethicist columnist and teaches philosophy at N.Y.U. To submit a query, send an email to [email protected].
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